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A Happy Ending for Surprise Diagnosis for One Doctor by Another Doctor from a Land Far Far Away

A Happy Ending for Surprise Diagnosis for One Doctor by Another Doctor from a Land Far Far Away

June 23, 2022 | By Mozna Osman

Introduction from the IAES Blog Team:

IAES is proud to present to you the AE story of a doctor that truly exemplifies our international impact! We hope you find this as inspirational as we have.

—–

I am a family medical doctor living and practicing medicine in Khartoum, Sudan. My story began about three years ago when I realized I was often feeling very tired and had terrible headaches. I decided to go and get my own blood work analyzed to see if there were any obvious issues going on. What I found out was that I had Malaria and a UTI (urinary tract infection). As a doctor, I decided to go ahead and treat myself with the appropriate medications needed for both issues.

I thought I was doing well and, on the mend, but I was not. Not long after this, my son found me, unresponsive, on the floor. I was admitted into the intensive care unit (ICU) of a local hospital and was in a coma for a month. As luck would have it, a visiting doctor from Chicago was asked to review my case. After reviewing my medical chart, he diagnosed me with anti-NMDA Autoimmune Encephalitis. He suggested a course of treatment that included medication and plasmapheresis. I feel very fortunate and blessed to have had my case reviewed by a doctor from so far away.

I am now feeling much but better but I still suffer from memory issues like many patients with AE. My short memory seems more affected by AE than my long-term memory but is getting much better. I am happy to report I am back to practicing medicine and am working at AL-Shaheed Wedatallah Medical Center in Khartoum. I am hoping for a bright, happy, and healthy future.

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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Jackie Stebbins’ Book Release – Unwillable

Jackie Stebbins’ Book Release – Unwillable

June 8, 2022 | By Jackie Stebbins

Introduction from the IAES Blog Team:

Autoimmune Encephalitis Warrior and now author, Jackie Stebbins, released her first book regarding her AE journey to great acclaim in early June 2022! We are proud to support Jackie, to further AE awareness and to celebrate a very happy ending! Jackie’s book can be purchased on Amazon here.

—–

In some ways, I still cannot believe it’s true. I published a book! Susannah Cahalan, author of Brain on Fire, says Unwillable is “as moving as it is important.”

As I write this, it’s June 5, 2022. That means exactly four years ago, I took my place in a wing of a clinic in Bismarck, North Dakota, full of overstuffed, brown chairs and IV poles behind them. I was there for my first IV steroid treatment, to hopefully turn my brain back on from autoimmune encephalitis (AE).

As I sat in the recliner, broken from a violent seizure, lost from the past few months of hell, and still in a cognitive fog, my family prayed that the steroids pumped through my body could save my ailing brain. And in a grand stroke of luck, the steroids did almost immediately save me. My life was quickly turned around again, but so much had already been lost. Damage was done.

282611734 819445159443008 7686218785706316893 n - Jackie Stebbins' Book Release - UnwillableMy husband took a photo of me that day. My eyes look tired, afraid, and lost. Four years later, I see that same tired, scared woman, but I want to hug her and tell her: It’s okay. This story has a happy ending.

The capstone of the AE journey I’ve been on is the publication of my memoir, Unwillable: A Journey to Reclaim My Brain. On June 1, 2022, Unwillable was officially launched and is available for purchase on Amazon.For me, this is one of the happiest outcomes I could have ever imagined after the past years of grief, loss, imbalance, heartache, tears, and life’s drastic changes. Unwillable was a way for me to process my trauma, share my feelings, and hopefully, help spread awareness about the illness that almost ended my life.

AE is a disease that devastates and destroys those in its path. Until we have standardized treatment, a cure, and no one else ever again suffers from this monster, the best we have is hope. Hope for better days ahead and dreams of an AE-free world. 

Wherever you and your family are in your journey with AE, it is my sincere hope that Unwillable finds a way to your heart and helps you in your struggles. 

In solidarity, 

Jackie M. Stebbins, Esq.

jmstebbins.com

unwillable.com

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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Psychosis or Something More? A Family’s Search for Answers

Psychosis or Something More? A Family’s Search for Answers

May 26, 2022 | By Libya Matney

Introduction from the IAES Blog Team:

The International Autoimmune Encephalitis Society is proud to present to you the AE story of one of our mighty Warriors in her own words, an article written about her AE path in the University of Arkansas newspaper (link below) and beautiful artwork given to her by a wonderful friend and artist depicting her within the struggle of this devastating diagnosis!

 

As a 21-year-old stay at home mom to a precious little boy, Benjamin, I never thought that something so life-altering would happen to me. My husband and I had spent 9 months trying to conceive our second child. Finally, in June of 2021, we were able to get pregnant. Around the same time, many random things started happening to my body. Nobody understood what was happening. My scalp was burning, I had chronic migraines, confusion, insomnia, OCD tendencies, and I started showing aggression towards my family. All these things seemed to begin to rule my life. I began cleaning my house aggressively and trying to get rid of everything that I own. I would tear things out of the closets and try to reorganize them at the same time. I was exhausted. I was forgetting everything. I began to believe that I couldn’t be left alone to take care of my son. My family and friends began taking turns staying with me during the day. At this point I had been to the doctor several times and had multiple blood tests and two CT scans. Everything came back normal.

On August 19th, 2021, my husband and mother-in-law decided to take me to a hospital in Fayetteville, Arkansas (AR) to see if they could figure out what was happening to me. They performed the same blood tests and scans that I had received previously and, of course, they came back normal. On the way home from the hospital that day, I had what the doctors would call a “psychotic break”. I began kicking and hitting my husband in the car and trying to open the door to get out. My husband and mother-in-law frantically called my mom. She said that she could hear my husband in the background begging me to stop. My mom told them that she was on her way to us and to call 911. When the police and Emergency Medical Services (EMS) arrived, my mom had my doctor on the phone to convince them that something was medically wrong with me and that I needed to be taken to the emergency room (ER). When EMS tried to get me to the gurney I dropped to the ground. They had to lift me onto the gurney and into the ambulance. This was when I was transported to the ER in my hometown, North Arkansas Regional Medical Center (NARMC). The last thing I remember from that fateful day was stopping in a restaurant parking lot and trying to get out of the car. I don’t remember the police or paramedics being there. I don’t remember anything from the rest of that day or the month that followed.

My family has told me that while I was in the ER, I kept trying to leave. I would fight the medical staff and my family so hard that they had to restrain my arms and legs to keep me from getting out of bed or hurting myself. During the 4 days that I was in the ER at NARMC, I had a CT scan, an MRI, a spinal tap, and multiple blood tests done. I ended up miscarrying my child the last day that I was there. I was transferred to St. Bernard’s Medical Center in Jonesboro, AR on August 23rd, 2021. During the transfer, I slipped into an unresponsive/catatonic state. A procedure was performed to remove the tissue from the fetus, as well as the same testing that had previously been done in the ER. Other testing that was done consisted of EEGs and ultrasounds. Six days after being transferred I was placed on a ventilator because of having back-to-back seizures and my heart stopping. After two weeks of having no nourishment besides IV fluids, a feeding tube was also placed in my nose. I was in St. Bernard’s for a month before they sent my blood and spinal fluid to Mayo Clinic. An infectious disease doctor diagnosed me with anti-NMDA Receptor Autoimmune Encephalitis and GFAP. A few days before I left St. Bernard’s, I woke up with a feeding tube still in my nose. I did not know the month, day, or what was happening. I couldn’t walk or use the right upper side of my body. Also, due to having been on the ventilator and having the feeding tube, I could not talk. I was given a letterboard to communicate and the first thing that I asked about was my pregnancy. I couldn’t remember miscarrying the baby. On September 22nd, I was transferred to Barnes Jewish Hospital in St. Louis, Mo. Doctors began plasmapheresis (plasma exchange).  During the 10 days that I was there I received 5 rounds of it. I had another MRI, EEG, spinal tap, and two ultrasounds during my stay there.  Blood and spinal fluid samples were sent to Mayo Clinic to be rechecked. On October 1st, I was moved to Everest Rehabilitation Center in Rogers, AR, where I spent every day in physical, occupational, and speech therapy. I had to relearn how to walk, and I had to regain my physical strength and my voice. My last week at the rehab center, I finally got to see my son, Benjamin, after not seeing him for over a month. They included him in my physical and occupational therapy. On October 19th, two months after being taken to the first hospital, I was released to finally go home. When I got home, I started outpatient physical therapy at Mount Carmel Physical Therapy Center in Harrison, AR. I had physical therapy twice a week for 8 weeks. In January of 2022, I had two rounds of Rituxan infusions.

I am now back home with husband and son, and I can enjoy spending time with my family and friends once again. My life will never be the same after my AE diagnosis. I will always have to keep tabs on my stress levels and watch for signs of relapse. I still have months before I can drive again and am still at risk for seizures. However, I have learned a lot the past year. I’ve been cared for by people that will forever hold a place in my heart. I’ve grown, I’ve changed, and I am thankful for the life and family that God has blessed me with. 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Psychosis or Something More? A Family's Search for Answers

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Psychosis or Something More? A Family's Search for Answers 

Be a part of the solution by supporting IAES with a donation today.

 

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The Darkness of a Brain on Fire

The Darkness of a Brain on Fire

April 27, 2022 | By Chelsea Wagner

 

CW 3516 375x500 - The Darkness of a Brain on FireNumbers, numbers, numbers – we all have them. It’s how we organize and make sense of what’s happened to us. It is how we put our experiences into boxes so that they don’t spill over into every aspect of our lives.

For me it was 1,000 mg of steroids, 7 Plasmapheresis infusions, 6 EEG’s, 5 MRIs, 4 CT scans, 1 PET scan, 1 botched lumbar puncture, 1 traumatizing bedside central line insertion, and countless fascinated residents, fellows, and physicians who had no idea what was happening to me right in front of them. All those numbers were packed into a 31-day hospital stay split between 2 hospitals in the largest medical center in the world. And those numbers lead me here, to you, to the Autoimmune Encephalitis community.

During February 2019, I began to experience subtle signs and had an overwhelming feeling that something was “off” with myself. I had trouble spelling words, remembering passwords and even had trouble speaking with patients I saw as a genetic counselor. I began experiencing extreme anxiety, panic attacks, and other neurological symptoms. I would eventually go to the ER after my doctor discovered a right sided facial droop, fearing that I was having a stroke, I was admitted to the first of 2 hospitals.

During my lengthy stay on the stroke recovery unit (the youngest person by several decades), the doctors would be puzzled by my progressing symptoms and my eventual catatonic state. I lost the ability to speak, read, and write. After being placed on high-dose steroids, I became violent and turned into what the nurses and my family would call the “she-hulk” and throw objects, kick walls, and wrestle with hospital staff as they put restraints on my ankles and wrists and bound me to my hospital bed for days at a time. During this time, I would become a prisoner of my own mind. I endured auditory and visual hallucinations of my worst nightmares and lived in multiple alternate realities, many of which included me dying. I would return to reality for only brief periods of lucid time – although I could not speak or recognize my family, the terror and confusion were respite to what was happening inside of my mind. 

Eventually, the first facility would diagnose me with seronegative autoimmune encephalitis – but did not implement the well established treatment for AE – and I was sent home from the first hospital on a steroid taper with no attempt at plasmapheresis exchange or IVIG. The doctors were frustrated with me and with what little I was able to comprehend. They had given up on me regaining any semblance of normal cognitive function. They told my husband and family that I’d go home and I’d either “get better, or I wouldn’t.”

I didn’t. In fact, I was actively hallucinating as they discharged me from my first hospital and then spent an interim week drifting in and out of reality – barely able to communicate, having dystonic movements and absence seizures. I was clearly getting worse. I was fortunate enough to have personal connections to another hospital due to my job as a genetic counselor in the medical center. I was rushed in for a same day appointment with a leading neurologist in Autoimmune Encephalitis and admitted directly from her clinic to my second hospital.

After receiving the first of seven plasmapheresis exchange treatments, it was like a fog was lifted. Blobs of strange people began to take the shape of my husband, my mom, my friends and family. I found my voice, although Broca’s aphasia made it hard to communicate, I started making progress in speech and occupational therapy. Everyday it felt like fireworks were going off in my brain – the zing of new neural connections being made – I would tell my therapists “I can feel it in my brain” – every sense heightened, every new word remembered became a cause for celebration, every step around the ward was a sign of my physical strength returning. Who would have guessed the exhilaration of holding a crayon in my hand could bring, or the relief of hearing my name and knowing it was mine? The doctors were impressed and optimistic about my recovery, but no one could predict how much cognitive function I would regain.  I was told I would likely never be the same person I was before. And in so many ways that is true.

CW 7606 375x500 - The Darkness of a Brain on FireEven after my second discharge, I had months of speech therapy, occupational therapy, and cognitive rehabilitation. I lost most of my independence – depending on everyone around me to drive me everywhere, make follow-up appointments, pay my bills because reading words on a screen was akin to reading hieroglyphics. I felt, at my worst, like a burden to those around me, weighed down by guilt and shame of the upheaval I had caused in our lives. I felt lost in my professional life, unsure of who I was or what I contributed to a society where my 19 years of education did not triumph over my brain trauma. I felt alone, because no one had been inside my mind and could understand exactly what I had been through: how harrowing, how terrifying, how humbling, it is to stand on the brink of insanity and be brought back from the darkness of a brain on fire.

No one except this community – reading your experiences, your struggles, your triumphs – they connect me in a way I never thought I would be able to connect and helped me understand my singular experience is part of a larger community experience. Almost three years later, I have returned to my full-time job as a genetic counselor and help patients navigate an overly-complicated and often frustrating healthcare system that I am all too familiar with. My compassion and empathy for those struggling with a diagnosis, finding resources, and advocating for themselves abounds. And I am grateful to be here, to be able to return to my career, to recognize my husband’s face, to be alive, to be typing these words. I know that when I lay awake at night (because, hello, insomnia!) thinking of how everything has changed for me since AE – there is light, there is hope, there is resilience, there is grit, there is strength in me. All it takes is a brain on fire to illuminate it.

CW 3636 376x500 - The Darkness of a Brain on Fire

 

 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - The Darkness of a Brain on Fire

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - The Darkness of a Brain on Fire 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

What happens when your autoimmune encephalitis treatments aren’t working?

What happens when your autoimmune encephalitis treatments aren’t working?

April 13, 2022 | By WhereAreMyPillows.com

Message from the IAES Blog Staff: 

We are pleased to share with you that Where Are My Pillows has returned to her blogging game! The post below touches on the shared challenges of autoimmune encephalitis patients who relapse or whose inflammation remains refractory to first- or second-line treatments. Please join us in wishing her full success ahead as she embarks on the next chapter of her healing journey!

—–

This post is part of the recurring #WhereAreMyPillows blog column for the International Autoimmune Encephalitis Society and is adapted from a blog originally published on  www.wherearemypillows.com.

Introduction

Q: What happens when your autoimmune encephalitis treatments aren’t working?

A: You relinquish all unnecessary obligations, neglect your blog, and trade your human friends for Squishmallows who think no less of you for spending hours on end in bed.

wherearemypillows squishmallows 500x500 - What happens when your autoimmune encephalitis treatments aren't working?

Friends who don’t mind doubling as pillows—now those are real keepers.

Joking aside, it’s an exhausting and demoralizing road. While being diagnosed with autoimmune encephalitis (AE) in the first place is scary, failing treatments that normally give people their lives back is despairing. Recognition of the failure is slow. You’re told to hang tight and be patient for the immune system to adjust; but as months pass by without sustained improvements, the feeling that something is wrong begins to take hold.

The following runs through your head: Am I overreacting? Do I have permanent damage? Can this situation be salvaged? Will it be like this forever? Can I just give up and resign from this reality?

Embracing trial and error, and being fed up with the status quo

If you’re lucky, you have a doctor that realizes just how pernicious AE—brain inflammation—can be. More importantly, they realize they have multiple tools at their disposal to treat it and take responsibility for actually wielding them.

This can mean going beyond steroids, beyond IVIG, and sometimes even beyond rituximab (Rituxan). As far as I can tell, the doctors who create the best outcomes for their patients recognize that the amount of medications required is highly individual and that treatment responses are not always trackable via standard tests, especially for complex diseases like AE. And treating AE is ultimately a game of trial and error—part science, part art. The research can only run so deep for a rare disease that just started receiving attention in 2005.

Since I was diagnosed with AE in the summer of 2019, I’ve been put on methylprednisolone (Solu-Medrol), IVIG, Rituxan, plasmapheresis, and tocilizumab (Actemra) at varying doses, intervals, and timeframes. And just recently, I started mycophenolate mofetil (Cellcept) and received an infusion of cyclophosphamide (Cytoxan).

None of these are a surprising choice of therapies; they are all described in the medical literature as appropriate treatment options for autoimmune encephalitis. But what IS surprising to most people is that my doctors are actually:

  1. exercising all these options;
  2. overlapping some of them; and/or
  3. bothering to still treat me at all, given the protracted course of my illness (which began in 2014) and the fact I can still walk and talk.

It should not be surprising, but it is given the current paradigm of (arguably) conservative treatment that the average patient is offered. And sadly, a nontrivial subset of these surprised people are patients/caregivers that are still struggling, face seemingly impossible medical barriers, and rightfully suspect that there could be benefit from further treatment due to signs that their or their loved one’s inflammation is poorly controlled.

It’s heartbreaking to hear these stories and realize how easily I could be circling that drain.

That’s actually why I’m forcing myself to grind through the cognitive fog and write again. Some recent conversations have reminded me of how many people are needlessly struggling with obstacles on their AE journey, ones that can bypass others completely, all because of some stroke of dumb luck such as:

  1. The first doctor that saw the patient in the emergency room performed a spinal tap and believed the issue was neurologic rather than psychiatric.
  2. The patient lives in province/state “X” where a critical medication is on the formulary covered by the government/insurance plan—not province/state “Y” where a critical medication requires special authorization and is typically denied.
  3. The previously seronegative patient turned seropositive during a relapse, suddenly lending credibility to the diagnosis and making treatments more accessible.

wherearemypillows treatment chair 500x375 - What happens when your autoimmune encephalitis treatments aren't working?

While the field of autoimmune neurology is relatively new, it is not so new that one different roll of the dice should be able to dictate the outcome of a patient so profoundly.  It is unsettling how many more junctures my own AE journey could have been derailed at, the above bullet points being just a sampling.

There is clearly a need for greater physician awareness, better standards of care, and shifts to the present paradigm of treatment. And the more that patients/caregivers challenge the status quo, the sooner that change will come.

My goal in speaking out is to help level the playing field for those being caught in the AE quicksand. I’m far from the only person out there who deserves the opportunity to take another shot at permanent recovery. To those that have humbled me by sharing your stories or provided encouragement for me to keep plodding forward, thanks for galvanizing me into ending a four month writing hiatus.

Reexamining the mechanisms underlying autoimmunity

As mentioned above: I recently started Cellcept and Cytoxan in an effort to pull me out of my relapse that began in spring 2021. We had added Actemra to my regimen in July, hoping that would turn things around; but after 5 monthly infusions with transient improvements only and no compounding benefits, my primary neurologist agreed to pull me back into the hospital for plasmapheresis. It had worked beautifully for me in January 2021 and we were hopeful another 5 rounds over 10 days would work the same the second time around.

It turned out to be a bust. I’m glad I went through with it though; otherwise, I would always wonder whether plasmapheresis paired with stronger maintenance therapy would be a viable solution, rather than having to progress to chemotherapy. Again, it goes back to that whole “trial and error” concept. You evaluate the options based on your unique clinical scenario, make a strategic decision, compare the results with existing scientific knowledge, and synthesize all available data to inform your next steps. Along the way, you progressively refine your mental models.

But that’s not the approach you’ll find all doctors using. A few years back, my treatments were stalled by the terribly ignorant no detectable antibody = no autoimmune encephalitis explanation. Somewhere in the middle, it was the poorly reasoned it’s impossible to relapse on Rituxan you probably never had encephalitis but rather just have adult ADHD explanation. And now, several doctors later—and after scoring 2 standard deviations higher on an IQ test as a direct result of plasmapheresis, not psychostimulants used to treat an attention disorder—we’ve landed on an explanation that contains a couple more shreds of logic.

The doctor in charge of my current treatment plan is a neuro-oncologist who, in addition to cancer, treats a number of autoimmune conditions beyond just AE including myasthenia gravis and neuromyelitis optica. He explained to me in simplistic terms that when it comes to autoimmune neurological diseases, he looks at the individual and in broad strokes considers how much of the immune dysfunction is antibody-mediated/humoral vs. how much is cell-mediated. Response to treatment can provide clues.

IVIG, Rituxan, and plasmapheresis are known to be most effective for addressing antibody-mediated autoimmunity; since I’ve had diminishing returns from these treatments over the past few years, he suspects a significant proportion of my autoimmunity is now cell-mediated. This would also fit with the theory that I have GAD65 encephalitis, which is thought to involve a T-cell mediated immune response. While the call is debatable, both him and my other neurologist consider me a true GAD65 positive patient now rather than a seronegative one, as the antibody appeared in my serum and rose in titre on the 3 occasions we checked last year. Either way, my primary doc is confident that it’s time to move on to medications that target both B AND T cells—in my specific case, Cellcept and a Cytoxan.

Now, I am not a medical professional who can responsibly assess the validity of this framework; but this neuro-oncologist is well-respected amongst his peers, and the rationale for his decisions make a hell of a lot more sense to me than the ones provided to me by other doctors in the past.  While Rituxan initially got me back to baseline in 2019 and is a highly effective, permanent solution for many patients, it upsets me when doctors are adamant that Rituxan is a magic bullet for treating AE and that any ongoing symptoms absolutely cannot be due to uncontrolled brain inflammation. Or said a little differently: if your previous AE symptoms return but your CD19 test results are at 0, your AE is well-managed and we’ve finished our job. This hard-and-fast conclusion seems incredibly irresponsible and lazy to me, when even a cursory glance through the medical literature yields hundreds of articles discussing the utility of alternative treatment strategies across a number of AE scenarios.

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Moving forward

The takeaway here is that if you are dealing with ongoing levels of significant dysfunction, experienced a period of relative normalcy followed by a return of disabling symptoms, or your specialist has limited experience with treating AE, there may be further runway to explore.

I say that with a note of caution, being careful to acknowledge not everyone is going to benefit from seeking further treatment and some are already working with wonderful doctors who are truly doing everything they feasibly can. But judging from going through 12 neurologists myself and hearing the experiences of hundreds of patients/caregivers, chances are your doctors may not have painted the full picture of the options out there. There is more to the immune system and the mechanisms underlying autoimmunity than what the average neurologist appreciates.

If you want to explore other options or doctors, take some time to educate yourself first. Otherwise, it’s going to be hard to effectively advocate for yourself or your loved one. Without slogging through research publications, listening to the experts in the field, and/or joining support groups (like the International Autoimmune Encephalitis Society Facebook group to hear from others living with this illness, you tend to reach a ceiling on how far you can get. Alternatively, you might gain reassuring perspectives that help you realize your team of doctors is already handling everything appropriately.

As for me, I’ll be doing my best to keep advocating for AE awareness and better outcomes while I recover in the months ahead. You can also expect to see me popping up more regularly in online support groups and social media—see you over there! 😉

For more insight into what living with autoimmune encephalitis looks like, read more at my blog below or find me on InstagramFacebook, or Twitter.

wherearemypillows bio

WhereAreMyPillows is an autoimmune encephalitis survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram and Twitter #wherearemypillows

 

Click here or the image below to subscribe to our mailing list:

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Your generous Donations allow IAES to continue our important work and save lives! 

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Become an advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series

Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series

July 14, 2021 | By WhereAreMyPillows.com  

 Message from the IAES blog staff:

We at the IAES are pleased to be growing a resilient network of AE Warriors! It’s been a real pleasure to celebrate the critical milestones in recovery and care with so many of you as part of our AE Tuesday Tries initiative, hosted by Tessa McKenzie (our Chief Resilience officer).

To tie in with this, we thought it fitting to highlight the Resilience Report series that blogger WhereAreMyPillows created over the past 12 months of her multi-year journey with AE. Published consistently on her blog at the end of each month, she has provided us all with a snapshot into the realities of fighting for AE care and what it’s like to just keep putting one foot in front of the other on the road to recovery.

Through diagnosis, treatment, setbacks, growth, and recovery, we at the IAES are committed to helping you strengthen your own resilient spirit, just like we have witnessed develop through WhereAreMyPillows’ writing. Join us for weekly discussion in our Facebook group and sign up for our monthly Zoom meet-up, with our next one to be held on July 27, 2021.

This post is part of the #WhereAreMyPillows monthly blog column for the International Autoimmune Encephalitis Society and is adapted from a blog originally published on  www.wherearemypillows.com .

—–

flowers blooming wherearemypillows 300x225 - Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series

Two years ago last month, I was hospitalized for the first time. I was diagnosed with seronegative autoimmune encephalitis (AE). And I started 5 months of immunotherapy, roughly 5 years after my illness first began.

By November 2019, I thought the war was won: I seemingly had all the answers to solve my medical mystery, which had been open since 2014. It was clear by that month that standard AE treatments had worked wonders to bring me back to my original baseline of good health and cognitive functioning. Sure, I knew relapsing was a possibility; but were that to happen, I figured that healing again would be as simple as resuming Rituxan.

And then 2020 happened. 2020 taught me that there is a whole lot more to encephalitis, the medical system, and to put it plainly—human suffering—than I appreciated the first time I recovered.

But it (along with 2021) has also taught me that I’m capable of much more than I know. I started this Resilience Report series exactly one year ago—2.5 months after resuming Rituxan—thinking that an upward ascent was nigh. That I’d be declaring myself healed in no time. As it would turn out—NOPE! Turns out, I’d continue to deteriorate, accrue more medical trauma, and require another hospitalization to start recorrecting the bleak course of my disease!

As devastating as that was, what unfolded was actually a lot more meaningful than what I had originally hoped for. I was stretched to new limits, widening my horizons and deepening my understanding of what it means to be human. I found out what I’m made of, by being broken down into my component parts. And while it remains uncertain how the parts are going to be reconfigured, I see many exciting potentialities ahead. I mean, I’m not well enough right now to be jumping up and down about it just yet; but I feel a sense of conviction that whatever the future holds, it’s going to be okay. Underneath the surface struggles, I see a continuously evolving reserve of inner resources that will buoy me through whatever comes my way.

And with that, I’ve decided to conclude this Resilience Report series. I think they’ve served their purpose, providing an unvarnished and unglamourous glimpse into what it’s been like for me to persevere through the past year of living with AE. Lots of battles and lots of bumps, but with some key victories that encourage me to keep exploring the future with curiousity rather than trepidation. Most of the time, at least!

My biggest takeaway, after writing 12 of these, is knowing that there’s a reason I’ve survived the past 7 years. I feel that in my gut. I’m determined to make it, to live a compelling story, to help others along the way, and to reach a far more satisfying end to this journey. That’s what resilience means to me.

What’s ahead? Well for starters, I’ve got a PET scan on the books to capture the cognitive decline I’ve been experiencing again over the past weeks. Hopefully that will open up more treatment options, to push me out of this relapse and back on to the healing road I was on when I left the hospital in January. And I still plan to keep writing on my blog, with the goal of once monthly at minimum.

I leave you with a relevant highlight of the past month: seeing the AE Alliance newsletter published, with my story starting on page 12. It was a real honour for me to be asked to write a piece for the Alliance’s recurring “My AE Journey” newsletter segment, as besides the IAES, the Alliance is another important organization that is moving mountains in the AE world and directly impacting patients just like me. Check it out here.

ae alliance newsletter feature wherearemypillows 500x249 - Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series

And… that’s a wrap! Thank you to everyone who joined along with me for this series, and for those who’ve dropped a line—you’ve done wonders to aid me in remaining resilient through this journey, and I would not have gotten as far without you 😊

This post concludes my Monthly Resilience Report series, in which I document the ebbs and flows of recovering from autoimmune encephalitis. Previous ones can be found below:

For more insight into what living with autoimmune encephalitis looks like, read more at my blog below or find me on InstagramFacebook, or Twitter.

wherearemypillows bio

WhereAreMyPillows is a seronegative AE survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram and Twitter #wherearemypillows

 

Your generous Donations allow IAES to continue our important work and save lives! 

guidestar platinum logo 300x300 1 e1605914935941 - Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series

 

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

This is what it took to lift me out of an autoimmune encephalitis relapse

This is what it took to lift me out of an autoimmune encephalitis relapse

May 12, 2021 | By WhereAreMyPillows.com  

 Message from the IAES blog staff:

We’re pleased to share this long-awaited update from an IAES community member, whose story we first brought to you last year! This post is part of the #WhereAreMyPillows blog column for the International Autoimmune Encephalitis Society and has been republished from www.wherearemypillows.com.

—–

 

Lemme tell ya: this ain’t for the fun of it.

The plane lifts. Like many traveling for the first time since the pandemic began, anxious feelings churn beneath my calm exterior.

Is it safe to fly? Will I regret this later?

At the very least, the destination promises to deliver on novelty, excitement, and energy—qualities that had been missing from much of the past year. As we reach cruising altitude, my nerves are gradually dampened by daydreams of stepping inside iconic landmarks, taking in a show, and sating my photographer heart with vistas of an expansive skyline. Soon, my imagination is running wild with all the things to experience as a first-time visitor to the City That Never Sleeps.

Turbulence. The plane shutters, jolting me back to reality.

Right. This isn’t a vacation; this is a do-or-die effort to receive critical medical care.

#HospitalLife

The next thing I know, I’m being jabbed in the lower back with needles. I’m feeling electrodes placed across my skull. I’m having a catheter placed in my jugular vein. I’m seeing my plasma collect in a bag.

And suddenly, the answer is clear: the risk paid off.

I’m left with medical trauma to disentangle, a giant headache of ongoing maintenance treatment to coordinate, local doctors to answer to, and thousands of dollars of medical bills to pay; but it bears repeating: THE! RISK!! PAID!!! OFF!!!!

It was distressing, it was lonely, and it was painful; yet I’d do it all again in a heartbeat. There’s nothing like having your cognitive faculties restored after suffering months in a dementia-like state.

plasmapheresis 1 500x375 - This is what it took to lift me out of an autoimmune encephalitis relapse

AUTOANTIBODIES BE GONEEEEEE!!!

Wait… what?

If you’re thinking “what the heck did I just read,” good—then I’ve managed to capture a sliver of the “what the heck did I just live?” feeling that I have yet to shake since walking out of the hospital in January.  I’ve just retold the story with a veneer of fiction; but in fact, this is real life with an autoimmune encephalitis (AE) diagnosis.

More specifically, when you’re claiming to be in a relapse (and seronegative to boot), your prospects are grim. You’re trapped in a grey no man’s land where few doctors are willing to provide rescue. Through 2020, from 5 different neurologists, I heard everything from “I can sympathize but have nothing else to offer you,” to “you’re just dealing with sequelae,” to “this might all just be adult ADHD.” This, after being diagnosed and fully recovering in 2019—back when I was hospitalized 3 times and went through more than enough, but still had little idea of how much more complex the nightmare could get.

In this floundering state, the onslaught of failed doctor’s appointments threatens to turn your self-assured core upside down. Clearly you’re capable of holding a conversation; there’s nothing wrong with your brain, right? The semblance of basic medical knowledge and verbal coherence draws suspicion; are you just looking for attention? A convenient way to justify a malingering state during a difficult pandemic year? As the slammed doors of doctor’s offices pile up, the doubt creeps in.

Whose voice do you listen to, when you’re increasingly aware that your own is marred with symptoms of cognitive decline?

As the year drew to a close, I was hit by a ton of bricks. Then, finally, my mind registered: this situation is so simple, it’s ridiculous. I’m a shadow of my former self, and I need aggressive medical attention STAT.

And as it turns out, my instincts were right. It took getting the attention of a top expert in the field, traveling thousands of miles, and enduring a challenging hospital stay during a pandemic; but I not only proved I was in a genuine relapse, I experienced remarkable recovery as well.

Getting down to the nitty-gritty…

What happens when your doctor orders 5 cycles of plasmapheresis, 5 infusions of Solu-Medrol (methylprednisolone/high dose steroids), and 1 infusion of Actemra (tocilizumab)?

In my case: a brand-new person.

In total, I spent 13 days in the hospital and endured a barrage of daily discomforts I’ll spare you from having to read here. The important part is that the treatments worked wonders. Halfway through the stay, on the morning of my third plasmapheresis cycle, I felt as if a light switch was flipped in my head.

Suddenly, I was alive.

Once-dormant neurons began rumbling awake, with electricity freshly flowing through brain regions that had spent the past 10 months offline. The normally reticent resident perceived the transformation too, remarking “there’s something very different about your energy,” during his early morning rounds.  Words like that feed the soul when you’re used to a default of medical dismissal.

The remainder of the stay was a breeze. Relatively speaking, at least—never mind the ongoing challenge to find good veins, power struggles with a certain nurse, and mild autonomic issues. Each day was better than the last, with the capacity for higher level cognitive processes returning, more of my personality coming back, and improved emotional regulation (I hadn’t even realized how haywire my emotions had become until the autoantibodies were removed from my system). Solu-Medrol helped fortify the early gains from the plasmapheresis, and Actemra was provided to prevent any rogue autoantibodies from returning.

I cannot overstate the night and day difference between pre- and post-hospital me. When you go from ruminating about a potential future in a dementia care home, to experiencing the brain of a healthy young adult again, it’s pure elation. No hyperbole—I made a miraculous turnaround starting with the plasmapheresis treatments, and I’m incredibly thankful for the doctor that recognized my need for this treatment.

As for the individual roles of Solu-Medrol and Actemra in contributing to recovery, I’m less certain; but given my level of cognitive dysfunction, protracted AE history (originating in 2014), and unsatisfactory response on rituximab alone through 2020, my doctor felt they were necessary additions.

Please note that I’m not providing medical advice or implying that this treatment is appropriate for all AE patients; furthermore, results from plasmapheresis vary from quick and dramatic like me, to imperceptible for others.

plasmapheresis 2 500x375 - This is what it took to lift me out of an autoimmune encephalitis relapse

This post brought to you by…. *drumroll* …. this machine! I would have a fraction of my present functionality were it not for the wonders of this technology.

In Perspective

I fully recognize my case of AE is grey. I have a relatively isolated, dementia-like presentation that is not detectable on an MRI or via standard CSF markers, but does involve vague EEG abnormalities and mixed hypo/hypermetabolism on a FDG-PET scan.

I understand why most neurologists struggle with this. They don’t want to risk hurting you with medications or procedures that come with potential side effects, and they’re used to treating patients with a more black-and-white picture.

But what I DON’T understand is the rampant gaslighting experienced by patients left, right, and centre within the AE community—not just by me. I went from capably managing 40-60 hour work weeks in early 2020, to having to bow out of work altogether. You can’t just peg that on residual symptoms leftover after my initial treatment in 2019.  And some of the alternate narratives suggested to me, while convenient if true, were incredibly sloppy (ADHD—really?!) and left me with psychological battle scars I’d rather not have. For all the specialists I’ve seen, I actually have a relatively straightforward medical history; I can only begin to imagine the frustration felt by patients whose doctors remain fully adamant their symptoms are due to a comorbidity, and NOT autoimmune encephalitis.

It should not take 12 neurologists over 6+ years –with 4 weighing in with erroneous judgments while I was relapsing, even after the diagnosis had already been established the year earlier—to fix 1 AE patient.  It’s really not that complicated. Yet our present medical system makes it so, stranding scores of AE patients who are left to needlessly suffer. My situation of misdiagnosis and mistreatment is not that unique, and that’s what troubles me most.

As for today: I’m not at baseline, I still have some unsteady days, and I still don’t have all of the maintenance medications I’ve been prescribed. Frankly, the follow-up care outside of the hospital has been a bit lacklustre; in the end, the panacea for AE care remains elusive. In a situation like mine, it’s still on the patient or caregiver to hound doctors’ offices, facilitate insurance appeals, coordinate communication between doctors, and take command of figuring out logistics for ongoing care. I’m run down. But I’m also keenly aware that I’ve already experienced a level of treatment and healing that many patients aren’t so fortunate to experience, and for that I remain incredibly grateful.  Fingers crossed the treatments hold, and that the healing continues.

The major takeaway here? If you know in your gut that something is medically wrong, keep advocating for yourself (or your loved one). Dig deep inside yourself to keep going, until you find the answers that sit right with you. This may not always look like more treatment; there may not be anything further that can be done. However, many times there is—it just takes some serious persistence. That’s the ugly reality of AE today (one I hope to help change for the future). You might need to spend hours gold-panning for the right nugget of information and stomach some gut-punches from the medical community, but it can absolutely make a world of difference towards restoring your quality of life.

Believe me, I had my days I wanted to give in. But once the wallowing subsided, I kept turning back to my community. There are many out there, more resilient than me, who inspired me to inch forward whenever the going was rough.  Get resourceful, and don’t be shy about reaching out to others—these were pivotal components to unravelling my own personal AE puzzle. You can find a list of AE-specific support groups here.

I hope this post benefits someone out there in the same way I’ve been fortunate to benefit from patients and caregivers on this journey alongside me. To those who have helped me weather the AE storm, thank you from the bottom of my heart ❤️️.

For more insight into what living with autoimmune encephalitis looks like, read more at my blog below or find me on InstagramFacebook, or Twitter.

 

wherearemypillows bio

WhereAreMyPillows is a seronegative AE survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram and Twitter #wherearemypillows

 

 

Your generous Donations allow IAES to continue our important work and save lives! 

guidestar platinum logo 300x300 1 e1605914935941 - This is what it took to lift me out of an autoimmune encephalitis relapse

 

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - This is what it took to lift me out of an autoimmune encephalitis relapse

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - This is what it took to lift me out of an autoimmune encephalitis relapse 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

December 19, 2020 | By WhereAreMyPillows.com  

 

This post is part of the #WhereAreMyPillows monthly blog column for the International Autoimmune Encephalitis Society and has been republished from www.wherearemypillows.com

 

—–

Please note that the following is based on my (WhereAreMyPillows) own personal experiences as a patient living with autoimmune encephalitis. Everyone’s journey is different; some may disagree with the views presented.

The world that doctors live in…

The classic story arc of autoimmune encephalitis goes something like this: a patient presents to the hospital emergency room with an abrupt onset of psychotic features that include hallucinations, paranoia, anxiety, and strange behavioural changes.

They’re evaluated by the psychiatry service, medicated with psychotropic medication, and monitored to ensure they don’t become a danger to themself or others.

But the patient’s symptoms persist; then, seizure-like activity is witnessed by someone on their medical team. Physical weakness, loss of balance, autonomic dysfunction, and other physical abnormalities quickly follow.

The neurology service is called in. An EEG, lumbar puncture, comprehensive blood panel, and an MRI are ordered and come back with several abnormalities.

The diagnosis? Presumptive autoimmune encephalitis (AE), made definitive a couple weeks later when serum and spinal fluid results are reported positive for antibodies against the NMDA receptor (or another recently discovered autoantibody).

Steroids and IVIG are promptly administered, further deterioration is halted, and the patient begins to make a turnaround. Within weeks, family members start to recognize their loved one again. The patient has some months of rehab work ahead of them, but the disease has been arrested—modern medicine has done its job!

At the 6-month post-discharge follow-up, healing is judged to be progressing smoothly; 1 year later, the AE patient has recovered and made a full (or nearly full) return to their pre-illness activities. No further complications. Case closed.

….Versus the world that patients live in.

Oh what a neat, tidy, and ultimately naïve narrative.

It’s the idealized version of the patient journey—the one that, in fact, most (but not all!) AE survivors fall short of.  Myself being one of them.

More saliently, it’s the story that poorly-informed physicians—often neurologists—tend to stick to. No ifs, ands, or buts.  In their eyes, anything that colours outside of these lines can’t be related to autoimmune encephalitis.

…..Okay, that’s probably an unfair characterization and overgeneralization. Forgive me for being salty right now; not all doctors are narrow-minded. I’m just exasperated after speaking with 5 neurologists too many in the past month, continuing to have ongoing medical chores, running on fumes, and feeling mostly like crap for the past 8 months. It’s both heart-warming and soul-crushing to think back to around this time last year, November 2019, the first time I felt like I had finally gotten my neuropsychiatric symptoms into remission after a 5 year journey of misdiagnosis (which culminated in being hospitalized).

One whole year after recovering from Rituximab and IVIG, I didn’t think I’d be back here. In some ways, 2020 has been like the sped-up version of my 2010s: a time that began with unbridled dreams, aspirations, and excitement (excellent health as I began adulthood); a sudden lurch that threw everything up in the air (medical challenges and uncertainty); and a bumpy landing where all sense of progress ground to a standstill (poor health). In 2020, I started a new chapter of life in a new country (USA); I relapsed; and the subsequent months have gone sideways. The 2010s DID conclude with some medical miracles and a remarkable recovery—if I look through an optimistic lens, I can see how things may be shaping up for a similar outcome again.

But right now I’m just bitter.

This time last year, I knew relapsing was a possibility; however, I was comforted by the belief that I had a concrete diagnosis after spending 5 years without one. I thought I was done with falling through the medical cracks. As far as I knew, autoimmune encephalitis is a very treatable condition, we know what medications work for me, and the field continues to rapidly progress. And I managed to get my full health back, after progressive worsening that started in 2014.

So maybe you can imagine my anguish from realizing I’m in the midst of reliving parts of that 5 year nightmare once again. Instead of accessible medical care and treatment after my relapse, I’ve been met with medical gaslighting and new barriers—made all the more heavy by avoidable medical trauma of my past.

Here’s a representative story that amalgamates parts of my own healthcare experience together with common experiences I hear from other AE survivors in patient support groups:

What happens when you relapse

1. Some doctors dismiss the possibility that you are relapsing.

One day, you face the fact that some vague symptoms have crept up on you the past couple weeks. Maybe your balance seems a bit off. Maybe you’re slurring your words a bit. Maybe your emotions are uncharacteristically erratic. Maybe you’re having bizarre memory lapses and spells of paranoia.

So you go back to your doctor, only to be given a flippant reminder that AE often leaves long-term sequelae and permanent deficits you have to learn to live with. There’s nothing more to be done. The inflammation can’t be there anymore. Go home and get on with your life.

But lo and behold: a couple weeks later, your health deterioration is undeniable. You’re forced to take a leave from work, and find yourself readmitted to the hospital after having a seizure.

Evidently, overcoming a return of AE symptoms is not simply a matter of pulling up your bootstraps and willing your way back to good health.  The immune system can be a temperamental beast; having it knocked out of balance once can certainly make it more susceptible to being knocked out of balance again. While not all symptom exacerbations point to a true relapse caused by immune dysregulation, there’s certainly reason why patients should remain closely monitored.

Research is limited, but a publication from Dalmau and Graus (2018) estimates that AE relapses occur at a rate of 12-35%. You learn later (just a little late) that some doctors know to be vigilant and closely monitor for returning symptoms, while others adhere to the misguided dogma that AE is rarely more than a monophasic illness.

2. There are no widely accepted protocols for what to do during a relapse.

Autoimmune encephalitis entered into the neurological mainstream in 2007, when Josep Dalmau at the University of Pennsylvania published his discovery of anti-NMDA receptor encephalitis. That makes the field of autoimmune encephalitides relatively young.

While AE experts have roughly come to agree on the medications and protocols for patients early in their disease course (particularly anti-NMDA receptor patients), there’s little out there to guide physicians dealing with patients who recover slowly, have ongoing symptoms, develop new symptoms, or end up in a full-blown relapse.

So when you consider how common initial treatment delays are due to under-recognition of the disease and lack of worldwide AE expertise, it’s not hard to imagine the reluctance and challenges faced by the average physician when confronted by a patient in the midst of a relapse.

3. Your response to medications may not remain consistent over time.

A logical place to begin re-treatment might be to use the medications that helped you recover the first time AE entered your life.

Thus begins the lovely road of IV medications all over again.  It’s a painful crawl down memory lane, but it’s a relief to know that at least your medical concerns are now being taken seriously. Further deterioration seems to have halted, and everyone’s hopeful that you’re back on the mend.

Fast forward a few months however, and it’s clear that your relapse recovery is swerving left in a new direction. This isn’t the familiar road you were expecting.

Later, you learn it’s not uncommon for medications to lose their effectiveness as time goes on. Sometimes, different methods of targeting the immune system are warranted.

20201128 blood draw 500x375 - The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

Back in the thick of the medical journey.

What happens when you talk to other AE patients

4. You realize that the presentation, diagnosis, and treatment protocols for AE are more heterogeneous than you were led to believe.

When you realize your recovery isn’t going as planned, you reach out to patient support communities to find out how others are coping after their AE diagnosis.

It’s a boon to find real human beings who lend colour to the lonely experience that is autoimmune encephalitis. It’s also shocking at times: you learn far more from fellow patients than you do from your own doctors. You’re far from the only one without a textbook case of AE.

There can be a range of severity levels, some are misdiagnosed for years before receiving immunotherapy, people have variable responses to the conventional treatment protocols, and relapses ain’t so rare afterall.

It becomes clear that the current state of AE medical literature is not wholly representative of what this disease looks like for the patients living with the condition.

5. You observe large differences in the style of treatment offered to patients.

What dose of insert-name-of-medication-here should be administered? At what point do you escalate to second and third-line treatments? Are there instances where therapies should be combined? How long should a patient be kept on immunosuppressants? When and how do doctors make the judgment call that indeed, this patient is in a true AE relapse?

You see people from across the globe chime in to various online forums with their experiences. Turns out people are placed on medication regimens and provided with recovery guidance as variable as the manifestations of the disease itself.  Sure there’s many points of commonality, the basics of which appear in the medical journals; but it’s also unnerving to realize that the standard of care can differ from physician to physician, let alone state to state and country to country. This has drastic implications on a patient’s ongoing quality of life.

Some people are automatically provided with rehabilitation support in the form of occupational or physical therapists. Some are directed to get a neuropsychological examination. And some others might be left to their own devices after their discharge from the hospital, clueless that perhaps they could benefit tremendously from a speech language pathologist that provides cognitive therapy (i.e. me, up until a few months ago).

Most strikingly, you learn of several major U.S centres that have adopted the convention to keep patients on at least 2 years of immunotherapy after the acute phase of their illness. You notice a minority are even told by their docs that they’ll be on some form of an immunosuppressant for life.

Well, perhaps THAT partly explains why I relapsed, you think with some bitterness. Your original care team cut you loose from all meds and deemed you fully recovered, after only half a year of immunotherapy.

20201128 doctors office 500x375 - The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

Another glum doctor’s office.

What happens when you get a second opinion

6. Seronegative patients battle the ongoing question of whether they really even had autoimmune encephalitis in the first place.

After you’ve spent a couple months at a plateau—and far from your healthy baseline—you seek out a second opinion.

But you end up worse off than where you began prior to the appointment. Rather than offering insight into how they treat AE patients and suggestions for how to adjust your current regimen, this doctor spends an inordinate amount of time hung up on the fact that you do not have an identified autoantibody, despite other abnormal biomarkers consistent with AE. Even though antibody negative AE is a legitimate diagnostic entity. Even though new antibodies are continually being discovered.

They’re skeptical about the recovery you describe the first time you were given immunotherapy a couple years ago, using your inadequate response to recent treatment and ongoing symptoms as ammunition for their assertion that you have a primary psychiatric disorder instead. Even though there are more and more case reports of antibody positive encephalitis patients who fail first and second line immunotherapies.

You realize you’ve just been medically gaslit. Join the crowded club.

7. The search for proper medical recognition and treatment can become just as exhausting as managing the symptoms of AE itself.

You pingpong back and forth between your longtime family doctor, psychiatrist, and neurologist. They’re sympathetic to your situation, but ultimately reluctant to be the one to step up and alter your current medical treatment. They’ve had little to no experience treating a patient like you. Maybe your body is just taking longer to respond this time, one of them tries to reassure you. Another shares your concern that you’re backsliding, and encourages you to continue to seek out further AE expertise and guidance.

So you spend more time in patient groups, gathering names of doctors that others suggest. You take a deeper dive into the medical literature. You read stories from other patients in similar situations as you, sharing your darkened reality of falling through the medical cracks. You follow up on every promising lead, and spend countless hours reaching out to medical institutions that are miles and miles away.

You search. And search. And search.

Your efforts sporadically yield a new piece to the puzzle, with key information and answers feeling so close yet so damn far away.

8. It may take a few “second” opinions, but your persistence finally pays off.

After dead-ends ranging from offices that never return your messages, to doctors transitioning out of clinical practice to focus on research, to doctors with new patient appointments booking too far away in the future, you manage to line up some appointments with a few of the top experts in the autoimmune encephalitis field.  There’s no shame in doctor shopping by this point; you can’t waste any more time putting all your eggs in one basket.

One doctor stands out, offering an astute assessment of your present situation and outlining a clear plan for future treatment. Why can’t all neurologists be as straightforward, compassionate, and solutions-focused as her?!

There’s no guarantees that the new protocol will work, but at least your sense of hope is renewed once again.

20201128 sunrise snowy rooftops 500x375 - The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

So… now what?

Turning the narrative back to me: I started writing this post on a day I was frustrated, having spent large portions of the past weeks scraping by in survival mode.  It’s been a grueling time, with doors thudding shut and leaving echoes of the question “why do I even bother?”

I thought I simply needed to rant—which I ended up doing, to an extent. Part of me just wanted to curse away and throw a pity party, nevermind whether I should bother to post something like this at all. Let’s just say that these topics can get touchy and lead to arguments that cross lines into toxic territory.

But then I thought about the types of people who reach out to me. Oftentimes they’re stuck in a similar maze, feeling unsupported by their current medical team—or worse, by friends, family, and even other AE community members. I’m not a medical professional, but at least I can share personal insights based on my patient experiences.

And then I realized I’m tired of these pain points being swept under the rug. They’re shared by a significant number of AE patients, whose quality of life is worse off than it needs to be because a multitude of barriers exist between them and the medical attention they deserve. Throw in self-doubt, a lack of support, and discouraging remarks from those they’ve placed their trust in, and it’s easy to get lost in that “why bother?” mindset.

To those that are fighting similar battles right now, please carry on. Push forward and don’t lose sight of the light at the end of the tunnel, no matter how much it seems to be diminishing. It’s still there, waiting to brighten once you make it around the right corner.

I’m not sure exactly what’s ahead in my health saga, but I’m pleased to say that some new puzzle pieces finally came together this month.  Another doc, another approach, and better medical support have entered the picture.  And right now I think that’s enough to celebrate: getting to this point has been a hard-fought win.

For more insight into what autoimmune encephalitis recovery looks like, read more at my blog below or find me on InstagramFacebook, or Twitter.

 

wherearemypillows bio

WhereAreMyPillows is a seronegative AE survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram and Twitter #wherearemypillows

 

 

Your generous Donations allow IAES to continue our important work and save lives! 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis 

Be a part of the solution by supporting IAES with a donation today.

 

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Caregiver Tribute

Caregiver Tribute

November 25, 2020 | From the IAES Community

IAES wishes to honor all those caregivers that have not only loved, helped and never given up on all those with any form of AE but who have also helped all those suffering or have suffered from all forms of illness! Below are some thoughts and writings from both caregivers and those who wish to thank the many caregivers who have helped them.

We honor all of you….

——–

This is from my experience as a person with AE receiving care | By Mari Wagner Davis

As a person with autoimmune encephalitis, I woke up not knowing what had happened to me. I had to ask my husband, Geoff, what had happened. 

Despite my having a brain injury and forgetting so much of the last six years, his answer to me when I say, “I got so stupid,” is “You’re not stupid, you just forgot some things.” He’s had to figure out bank accounts, paying bills, our children’s college loans – well, you name it. Never during this time has he complained; instead, he has done his most to make me feel as capable as possible. Sometimes, it wasn’t much; other times we had a lot to celebrate, such as when I passed a special driver’s test, and most recently when I finished reading my first book in four years. He has been thoughtful and the best caregiver while still trying to allow me to do as much as I possibly can.

The life of a caregiver is not easy. They balance their own schedules with our needs. They balance concern with encouragement. They balance their own time with time for the things we need. They squeeze in time for our appointments, meds, questions, all without ever letting us know that their time is squeezed.

One thing I know is that the life of caregiver is one born out of love; no one would ever do all that they do except for love.

~Mari Wagner

My Life as a Caretaker | By Timothy Crossley

Being a teenager while juggling school and caring for my mother has its stresses. It’s hard for me to find her lying on the floor, seizing. I keep my schoolwork done at school so that when I’m at home I can keep an eye on my mother. I’m always asking how she’s feeling.

That’s my life as a caregiver.

~Timothy Crossley

Caregiver Tribute| By Linda Lowther and Amy Crane

I was having tremors and a very unsteady gait for about five months. I had been misdiagnosed by a neurologist with early-onset Parkinson’s disease. But as a nurse for 20 years, I knew something more was going on. One day in March 2015, I woke up and told my husband that I thought I was getting the flu and felt ill, so I called my manager to say I wouldn’t be in for work. That night when my husband returned home, I was unconscious and couldn’t be woken up. He called an ambulance and then called my sister. She then called my parents and brother, and all came to see me at the hospital. I was on a ventilator – I was unable to breathe on my own and was in a coma for two weeks.

I was then sent to a rehab hospital for over a month. I had to learn how to walk, talk, eat, write and spell all over again. My husband had told the MDs at the rehab facility that my parents had to take care of me. So, my parents had me move in with them to my childhood home. They took care of me because mentally I wasn’t able to do much for myself. They worked with me on word searches to help me improve my memory and so on.  My sister came to see me almost every night and would help to give me baths when I couldn’t do much for myself. This went on for over four years until I was well enough to drive and live on my own again.

If it wasn’t for what my parents did, such as my mom talking with me, singing with me and helping me, I truly would not be where I am today.  And my sister with her many sleepovers and sisterly talks helped me so much.  My mom and sister also helped me deal with my divorce when my husband filed for divorce after I was well enough to understand, something that was really hard on me mentally and physically.

I’m so grateful for my mom and sister for being the best caregivers ever. I love you with all my heart and I thank you for all you’ve done for me every single day, even up until today. I would not be where I’m at if it wasn’t for you, your love and support. Your caring hands enabled me to get well enough so that I am buying a newer, smaller home which I am very excited about! I truly cannot thank you two enough for all you have done for me and that you continue to do on a daily basis. I truly would not be where I’m at today without you. Love you mom.

~Linda Lowther and Amy Crane

Strength in the Storm and Beyond | By Tabitha Orth

Each case of autoimmune encephalitis claims many victims. While the focus is centered on the AE patient, it is the family caregivers who are the unsung heroes in every case.  Like a level 5 tornado, AE descends.  The routine calm of our daily lives is left in tatters from the torrent of destruction that struck out of nowhere.  What is left is not recognizable to what was just a short time before. 

It is the family caregiver – our spouse, parents, family members and partners – who are thrown into this traumatic, life-threatening upheaval and left to navigate the course of our care. While in shock, they must learn to navigate the medical complex, find an expert in the field of autoimmune neurology, understand the disease and its treatments, advocate for our best interests and keep a sense of normalcy going at home. Often, the patient is their confidant, so they are alone in making decisions and put their own losses, pain and suffering aside to care for us. They don’t voice their fears to us because we are not capable of answering their concerns. Their bravery, sacrifice and determination, all fueled by their unwavering love and devotion, propel them forward through the eye of the storm.

How do we say, “Thank you?” What do you say to the person who saved your life, shouldered the pain, worries and responsibilities all on their own with no concern for their own wellbeing?  They nurture us. They encourage us. They keep us safe through the process of our battle with AE.  Our caregiver has always been center stage in helping us reach recovery through our rehabilitation efforts, while shouldering that immense burden in silence.

I am here because my husband made sure I would survive and thrive. I am here because my son has always shown me patience, love and guidance.  The sacrifices they have made in order to do all the heavy lifting, pouring all their energy into my health and wellbeing, is why I am here today. 

November is National Family Caregiver Month. Please join me in shining a light on the unsung heroes of our AE journeys.  Without them we would not be where we are today.  With all that I am and all that I have, I thank each one of you. Thank you.

~Tabitha Orth,

President and Co-founder,

International Autoimmune Encephalitis Society

——–

We hope you find the following articles for caregivers helpful!

Disability & Health Information for Family Caregivers | Article from the Centers for Disease Control and Prevention

Caregiving can be stressful no matter how much you love your family member. Autoimmune Encephalitis is often a disease that takes time to recover from and some individuals will continue to have ongoing disabilities that does not mean that they cannot have a fulfilling life. Adjusting to what life used to be or look like requires time for both the person with AE and their family members. This article talks about how caregivers can care for themselves.

Neuropsychiatric symptoms and caregivers’ distress in anti-N-methyl-D-aspartate receptor encephalitis | Research published from the Chinese Academy of Medical Sciences and Peking Union Medical College

This journal article, published in September 2020, found that patients with anti NMDAR encephalitis often present severe neuropsychiatric symptoms, which aggravate the burden on caregivers. Immunotherapy significantly improves neuropsychiatric symptoms, and thus reduces the distress of caregivers.

FDA Listening Session: Discussion on living with a rare disease during the pandemic | Video from the National Organization for Rare Disorders (NORD)

National Organization for Rare Disorders (NORD) and FDA co-hosted a virtual “listening session,” during which the rare disease community had the opportunity to share their experience living with a rare disease in the pandemic and submit questions in advance directly to FDA staff. Listening sessions are meant to facilitate expeditious sharing of patient and advocate perspectives on how their disease and treatments affect their lives.

ABLE Accounts | Financial resource 

For disabled individuals or families caring for a person with a disability, an Able account allows you to save money to provide care without being taxed on it. This can include medications, therapy, food, housing and other disability needs. The Able Act currently only applies to those who become disabled before the age of 26. This article explains much more about Able accounts. Able accounts are provided by more than one provider, so one should look at the rules and how each works to find the best for you.

——-

Looking for a gift for your caregiver? Show your appreciation with an gift from the AE Warrior Store:

AE Warrior Caregiver 297x300 - Caregiver Tributeback of long sleeve t shirt 252x300 - Caregiver Tribute

 

Your generous Donations allow IAES to continue our important work and save lives!  

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

A Day of Living with Autoimmune Encephalitis

A Day of Living with Autoimmune Encephalitis

Bettina Goodwin Tony on a bad day Aug 2020 - A Day of Living with Autoimmune EncephalitisNovember 7, 2020 | By Bettina Goodwin, caregiver to her husband Tony

It’s morning and you open your eyes, groaning.

“How do you feel?” you’re asked, as you struggle to find the words to explain the fogginess and confusion — the sheer lack of comfort you feel in your body at that moment — but you move forward, ready to face another day.

It’s breakfast time so you eat what’s given to you, or you try your best to get down at least half, wishing you could taste it. That’s followed by a handful of pills that you swallow, hoping they control the multitude of symptoms that often overwhelm you. If the pills encounter a “bad day” you’re now accustomed to going back to bed, donning your headphones and sleeping, blocking out the world 

Today, though, is a good day. You arise and, once more, attempt to solve what you consider a “wretched” therapeutic crossword puzzle, slightly convinced someone must be laughing at you somewhere, because you’ve never used or heard of these words before in your long life. “Who’s ever heard of…?” You solve the challenge by looking up the answers using your cellphone. 

You’re stunned that a half-hour on this crossword exercise can leave you so utterly exhausted. Then you watch a TV show that is now unfollowable, despite that you’ve seen it so often before. But you laugh about this, and make a joke that hiding Easter Eggs this year will be easy. 

Then, you flick to another channel and watch it through closing lids. Tiredness envelopes you, your brain is foggy and fluctuating blood pressure now rising, so you could rip off someone’s head if they looked at you sideways. Dozing on the couch will help you recoup your good humor. While nodding off, you wish you could contribute to the household — even simple tasks would be good — but that might have to wait till tomorrow, as today you are far too fatigued. 

Life has slowed down, narrowed into symptoms and medical appointments, blood tests and infusions, which are neither remembered nor enjoyed. You’ve learned that this condition is a marathon rather than a sprint, with each day representing a journey toward health. 

Some days with autoimmune encephalitis are dismal and you hold on to the knowledge that tomorrow is a new day and you’ll be one step closer to the goal of beating this. Communicating with family and friends helps you feel a part of the world once more. You learn to accept celebrating a good morning, afternoon or day, and finding pleasure in these snatched moments when stars align and the fog lifts. 

Kindness is what keeps you going. The kindness of others, especially caregivers who respect your need to take things slowly and calmly. Family, friends and random strangers, who share a moment or assist you, smiling in acknowledgement.  

Kindness to yourself, allowing time to rest when your brain is tired, taking a step back from the daily hurley burley and focusing on something that calms you and allows a peaceful space. 

And laughter. Laughing at the hundredth time your coffee has been taken by martians, or the stairs moved while you were trying to best to climb them. Giving yourself permission to find your trials just a little funny, while allowing humor and kindness to assist your repair. 

You know that AE has its own timetable, but your life is more than this condition. It is the joy you find throughout the day and the loved ones you allow to be part of your journey.

Bettina Goodwin Tony in France Sept 2019 1 500x281 - A Day of Living with Autoimmune Encephalitis

 

In light of National Family Caregivers Month (November), we’re spreading the word on the Rare Caregiver Respite Program offered by the National Organization for Rare Disorders (NORD). Read more here.

NORD 237x300 - A Day of Living with Autoimmune EncephalitisThis first-of-its-kind assistance program is designed for caregivers (parent, spouse, family member, or signicant other) of a child or adult diagnosed with a rare disorder. NORD understands that caring for a loved one is a generous gift that demands signicant amounts of time, attention, patience and dedication.

The Respite Program provides financial assistance to enable the caregiver a break to attend a conference, event or simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $500 annually for those who qualify. Awards may be spread throughout the year or in a single use.

Your generous Donations allow IAES to continue our important work and save lives! 

seal - A Day of Living with Autoimmune Encephalitis

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - A Day of Living with Autoimmune Encephalitis

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - A Day of Living with Autoimmune Encephalitis 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

From on the Fritz to on the Mend: The Invisible Realities of Brain Injury Recovery

From on the Fritz to on the Mend: The Invisible Realities of Brain Injury Recovery

October 14, 2020 | By WhereAreMyPillows.com 

This post is part of the #WhereAreMyPillows monthly blog column for the International Autoimmune Encephalitis Society and has been republished from www.wherearemypillows.com

It’s a lovely day in the neighbourhood. The sun is blooming, birds are shining, flowers are sing—wait; that’s not quite how it goes.

Then it hits you: oh yeah, your brain is injured.

These days, my mind runs loops that straddle the line between normal thought and garbled logic. Innocuous at first glance, maybe; but troublesome when the loops wind threads of tangled reality into a web too bulky to slash through. At the heaviest of times, the circuit breakers trip and the fuses blow.

My mind becomes toast. Good luck reviving it.

Deep breaths, a protracted pause, and patience until the system comes back online. Then, the cycle begins again.

Such is the daily struggle of recovering from brain injury. In my case, mine was acquired in the form of autoimmune encephalitis: brain inflammation caused by my immune system attacking healthy cells in the brain. Plenty of other things—such as a stroke, seizure, tumour, oxygen deprivation and head trauma—can lead to similar cognitive spirals. While immediate medical care may halt the progression of further damage, patients are often left with a lonely and challenging aftermath to contend with.

Recovery is invisible, slow, unmapped, and uneven.

When your brain goes on the fritz

After 5 years of cognitive decline, my level of confusion and disorientation progressed to the point of hospitalization in 2019. The emergency room admitted me for having “an altered state of consciousness.” A lumbar puncture, EEG, MRI, PET scan, and numerous needle pokes later, I was diagnosed with seronegative autoimmune encephalitis.

In many respects, this side of the patient journey is actually the easy part. When you’re hospitalized with your brain on the fritz, you often lack the wherewithal to realize the extent of your cognitive issues.

Sometimes you’re left in a coma. Sometimes you’re conscious, but not actually present in the manner someone awake should be. Sometimes your memory is gone, only to be pieced together later with stories told by the people who witnessed your delicate state.

For me, the severe stages of my brain impairment shielded me from much of the suffering I would have experienced otherwise.

The beginning stages of the caregiver journey? Different story. I am incredibly thankful for my mom, who sat by my side nearly every day, functioned as my mouthpiece when I couldn’t advocate for myself, and endured the emotional anguish of seeing her daughter’s mind slip away. She’s the one who bore the brunt of my time in hospital, left on a rollercoaster of uncertainty and fear as doctors did their best to ultimately diagnose and treat me.

In any case, you’re typically afforded a level of respect and understanding from people that dissipates as time wears on. First mention of the words “hospitalization” and “brain injury” elicits the tacit knowledge that something severe has occurred, patience is warranted, and sensitivity is appreciated.

When your brain is on the mend

You’re discharged from medical care. The moment you step outside the facility, you feel like running a victory lap! But your body has other plans.

In fact, you go home, shower, and crash into bed for the rest of the day. It turns out you’re far more fatigued than you realize, and spend the next few weeks (or months) unable to gas your energy tank up to full.

I never knew how out of sync my emotions, body, and cognition could become until I dealt with brain injury. I came to learn firsthand how the wellbeing of one can exist independent of the others, leaving you with the scaled back capacity to function in the ways you could before.

It can feel like a scheduling problem, not so different from trying to coordinate a coffee date between 3 friends. Sometimes your schedules line up, and things move forward smoothly; sometimes your schedules are off, and you’re left waiting for a future that can’t come soon enough. Sometimes you go ahead with just 2 of you; sometimes schedules change unexpectedly, and you forge ahead alone.

In the early stages of recovery, my emotions, body, and cognition would hardly cooperate. I would feel like writing a message to a friend, but the words just wouldn’t come. Or my brain would let me complete some work, but before long I would need a nap. Or I would have the energy to cook, all the while judging myself for how clumsy and uncoordinated my post-injury actions had become.

“Be kind to yourself” makes sense intellectually, but that’s easier said than done. You’re thrust into a foreign reality, with a new brain that takes time to reacquaint itself with your body and emotions. And you’re likely underprepared for this adjustment. Many brain injury survivors are left without proper rehabilitation services or counselling support once they leave the hospital. It can feel like you’re left, forgotten, all alone.

At first, friends, family, and coworkers are generally kind and empathetic in the wake of your injury. But recovery takes longer than most people think. You start to realize that life goes forward for others at a pace you can’t compete with.

You soon develop a sense of alienation and isolation to work through, on top of your compromised cognitive state.

brain, neuron, model

The lingering issues that persist months later

Before I get much further, I should clarify: brain injury can look different from person to person. Some people experience a full recovery in a short period of time, while others are left with permanent deficits years later.

I have an unusual case of autoimmune encephalitis that has involved multiple remissions and relapses over 6 years. Right now I’m recovering from a relapse, which has reminded me all too viscerally how devastating it is to lose your cognitive function. This post is my attempt to make sense of this time period, as well as capture the commonalities I’ve noticed between myself and other brain injury survivors. Here are some of the lingering issues that exist for those of us in recovery:

1. Your brain takes time to work itself out of the twilight zone.

It’s hard to truly conceptualize what it’s like to lose brain capacity, unless it’s happened to you. Brain fog is one thing; brain injury is another. With the latter, it feels like critical connections inside your hardware have gone missing.

Recovery is a slow process to put your hardware back together, or to learn how to compensate without it.  Daily tasks require an immense amount of focus, concentration, and time to accomplish—if they’re within your reach at all. For example, the coordination required to drive and process information from road signs, changing traffic signals, and the movement of vehicles around you may take awhile to become comfortable with again. Or processes you could formerly run on autopilot—like brushing your teeth, making coffee, or getting groceries—may require a new level of concerted effort and mental energy.

Some days, the psychiatric involvement is strong. I think the following may be what some would call derealization or depersonalization. More than just a fried brain, it seems like there’s a layer of reality I’ve lost the ability to tap into.

My brain feels like a foreign place I have to reorient myself within from moment to moment. Various facets of my cognition are disjointed, such as my memory, concept of time, coordination between inner thoughts and speech production, executive functioning, and processing speed. I hold the premise internally that my body is on the mend; but that statement doesn’t jive too well with the lived experience, boots on the ground. I lose the sense for what’s actually happening inside my brain, as if somehow the existence of “me” is scattered elsewhere along a different dimension.

For now, I take comfort in knowing that these alarming neuropsychiatric elements are expected—that it’s going to be some time before I notice the ways in which my brain is recovering. But it’s hard to overstate how months of living with cognitive deficits and misperceptions of reality evokes a type of hardship that permeates into all aspects of your life. As much as I try not to dwell on these challenges, it’s sometimes overwhelming to deal with the emotional pain of losing my mind and attempting to regain it again.

2. Recovery isn’t linear, and the uncertainty is destabilizing.

I can never quite predict my level of functioning from day to day. As I alluded to in the previous point, my cognitive playground is constantly changing.

Generally, you might assume that “recovery from injury” will involve steady increases in improvement back to a baseline of good health. But this isn’t the case when it comes to the brain (and many chronic illnesses). It’s much more like a constant rollercoaster that lurches up and down, forwards and backwards, at any and all inclines. And at any range of velocities.

This means I’m constantly reorienting myself to an unfamiliar toolkit. Some days I can write 500 words before the fatigue kicks in; sometimes I spend a couple hours cobbling together 50, before needing to retire my mental efforts for the day. Some days I tidily knock off 10 items on my to-do list, while other days it’s a struggle to handle 2. This, coming from a “doer” and “go-getter,” is an especially tough pill to swallow.

The level of uncertainty that comes with brain injury recovery makes it hard to stand on your own two feet. It’s hard to schedule future plans, let alone commit to the responsibilities of school or work, when your functioning is inconsistent and unpredictable.

You’re caught in a catch-22: you want to orient your present self towards a destination; yet it’s hard to decide what that destination should be, since you have little idea of what capabilities your future self will arrive with. Maybe you’ll have the capacity to rise to the demands of the situation; maybe you won’t. In the latter case, you become prone to overextending yourself unless you learn to honour the limits of your body.

Any setback messes with your head, leaving you to question your judgement of past progress and how reliable your memory is. And with some conditions, such as autoimmune encephalitis, setbacks come with the question of whether the cause of the brain injury may be resurfacing—or if the cause was never fully resolved in the first place.

The ups and downs of brain injury recovery are destabilizing, as you never quite know how to evaluate your present state or forecast your future state.

3. You can’t relate with people in the same manner as before.

“How are you” is a simple question, yet I usually end up stumbling through the answer. There’s multiple layers to the truth here—which one is appropriate for the context at hand?

In many situations it’s easier to answer “I’m fine” than to delve into any details. Plus, it’s really more of a pleasantry than an honest question. You’re not going to tell the barista that you’re feeling frustrated trying to function with half your brain. But things get tricky when it comes to friends, family, and coworkers.

Yes, part of them wants to hear how recovery is going; but it’s also natural for them to assume a recovery quicker than how it really is,  and to have plenty of other considerations on their mind. I can tell some people get bored hearing me discuss my health, and I can’t blame them: there is so much more to life beyond the strange goings-on of my brain! I’d like to be discussing (hypothetical) cool places I’ve been going, the latest thing I’ve learned, or the hobbies I’ve taken up, too. But my reality is different. It’s dominated by medical appointments, naps, and attempts to implement strategies for overcoming my cognitive deficits. The energy to diversify my interests is few and far between.

As a result, I often end up glossing over how I’m really doing, and stretching myself to have an organic interaction based on the conversational inputs from the other person.

This puts me in a weird and uncomfortable headspace. You end up reflecting on your slow pace of recovery, questioning your mental preoccupations, and overthinking the mechanics of how to relate with others. You consider “maybe if people showed genuine interest in how I’m doing, I could get the truth off my chest and cleanse my mind for discussing other topics,” then start to wonder whether you’re botching all your social interactions. Then you talk to someone whose general attitude screams “just pull yourself together already!” and suddenly remember why you’ve grown accustomed to minimizing your inner state.

Besides the emotional complications, there’s the difficulties posed by the brain deficits themselves. My verbal fluency and processing speed are heavily impacted, which makes it hard to catch the rhythm of group dynamics and figure out how to contribute to conversations. Try as I will to be present in the moment, it’s hard not to become anxious and self-conscious as I witness my brain faltering in ways that used to be reliable.

Unfulfilling social interactions can leave you with an acute feeling of grief as you’re reminded of how radically your brains have been altered. The result is a unique sense of loneliness as you fail to acknowledge your inner world to others.

brain, birds

Making the best of what you have today

It’s easy to feel discouraged by the invisible realities that come with brain injury. There’s a lot to contend with in the aftermath of such a devastating setback. 

However, the field of neuroplasticity has taught us that the brain is a resilient organ. It can adapt to compensate for injury, restoring functionalities that were once severely impaired.

My own recoveries are a testament to what’s possible: I’ve bounced back from autoimmune encephalitis relapses several times, going from as low as 25% of my baseline level of functioning back up to 95-100%. A few months after my hospitalization last year, I became well enough to find my feet as a full-time Communications Manager, travel abroad, and build a life beyond any health limitations.

But what can you do in the meantime, while recovery feels out of reach? Frankly, this is a daily reassessment for me that I hope to cover in a future post. But for today, I have a couple quick suggestions.

If you have the mobility, get outside. Fresh air and walks in nature are good for your health, restorative for the soul, and help with getting you out of your head.

If you’re stuck inside, don’t isolate yourself further. Find an online community, if you don’t have a trusted friend or family member you feel comfortable reaching out to. Facebook groups are a wonderful outcome of the polarizing social media platform. Even if you’re not up for conversation, it’s powerful to read what others are posting and to realize you’re not alone.

For more insight into what autoimmune encephalitis recovery looks like, read more below or find me on Instagram, Facebook, or Twitter.

 

wherearemypillows bio

WhereAreMyPillows is a seronegative AE survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram, and Twitter pages #wherearemypillows

 

Your generous Donations allow IAES to continue our important work and save lives! 

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 Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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 For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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Prithima’s Story

Prithima’s Story

September 30, 2020 | By Prithima Sunasee

A NOTE FROM PRITHIMA’S HUSBAND, REELY 

I connected with Tabitha at International Autoimmune Encephalitis Society through Facebook  thanks to my wife’s cousin soon after my wife was evacuated to the UK. As I was trying to understand the illness better and make sense of things, Tabitha was a vital sounding board for many of my concerns surrounding the research and treatments out there and what to expect. She was always a text and phone call away when I needed her, especially when I was trying to understand the side-effects of different medications. She guided me through every assessment and report I received regarding my wife. Knowing who to turn to for support during a crisis can help you feel less overwhelmed and more able to manage your feelings and reactions, with the knowledge and support from Tabitha, brought hope and peace of mind.

—-

So my journey starts when I returned to Dubai after celebrating my daughter’s 1st Birthday in the UK with my parents and my family in Hastings in July 2016.
Everything went beautifully and we had a great time.

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My dad was battling Myeloma, a form of cancer. He had being fighting this for a while but had managed to come to my wedding in Dubai, and come to the birth of my daughter in Dubai, and celebrate her 1st birthday in the UK. He was a very strong man and during his illness he also suffered from STEVEN JOHNSON syndrome, which was when certain medications don’t react well together and cause a burning effect on your whole body, and his whole body was covered in blisters, it was extremely painful but he was always so strong and never ever gave up. He was our hero, especially mine, I would tell my dad everything and anything and he would always advise and guide me.

Once back in Dubai, I continued with my work for a trip support company as an Account Manager. I had worked in Aviation for over 15 years and it was an industry I was always passionate about.

But in November 2016 I started feeling unwell and was getting a headache, and I knew instantly this was not a normal headache. I knew something wasn’t right, but for a few days I ignored it as maybe “taking on too much stress from work”.

My dad was a retired nursing assistant and we would always run to him for advice whenever we were not feeling well, and he would tell us what to do. As soon as I told him about this awful headache I was having, he told me to see the doctor. After visiting the doctors, they said to take some pain killers and come back if the headache did not go away.

Once again I waited a few days and the headache just got worse, this time my dad said to ask the doctor for a scan and which we did, the scan was scheduled for a weeks’ time.

But before I got to that week, one night I knew I was not well at all. But I fed my daughter before putting her to bed and made sure the house was nice and tidy (I was a bit of a clean freak as some would say). Then I went to bed…

And woke up in ICU having been in a COMA, I was told that when I went to bed at night, I woke up hysterical and was crying and didn’t want to go to hospital. My husband rang our friends who lived nearby, and they came and picked us up to take me to hospital. On the way I had a seizure and that was it, my condition deteriorated, I had multiple organ failure and was put on life support.

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The medical staff in Dubai were great and so were the doctors (I’m told) but no one knew what was going on with me as it was something they had never seen. Whilst in the ICU, I was being fed with a tube in my stomach and breathing through a machine. My husband spoke to my Neurologists, and in time managed to get hold of Dr Lunn from University College London Hospital. My husband and the doctors described my symptoms, and together Dr Lunn confirmed that I had Anti-NMDAR Encephalitis.

Dr Lunn then collaborated with the doctors in Dubai on treatments. But things got worse and my condition deteriorated again. They discovered I had a teratoma in my ovaries and that was the cause of the Encephalitis. There was no option, my ovaries had to be removed in order to save my life, and my husband had to make that final decision for the doctors. I was in a coma during this stage so still oblivious to what’s happening outside my very dark world.

Whilst I was hospitalised, my parents and all my family were constantly being updated on my condition as they were all worried. My dad and mum were especially worried as they were so far away.

My mum decided she would come, and my dad would come a couple of days later with his sisters (as he could not travel alone because he was quite poorly himself).

They, amongst other members of my family, came to see and support us and my parents.

My husband and Dr Lunn decided that the only place I could be treated was either the US or the UK, and as the UK was my home country, the decision was for me to get treated in the UK.

So my dad, mum and family had to go back to the UK. My dad had to get all the paperwork to arrange for my arrival and provide proof that I have lived and worked in the UK (in order for me to get treated here).

My husband really was a great strength and support, and has full faith in god and let god guide him in everything he did. He was currently working for a Medevac company based in Dubai. And for us his company were the best, they helped getting my repatriation arranged and made possible everything that seemed impossible.

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Whilst I was being prepared for my repatriation, my husband had to sell up everything that we had in Dubai (our apartment, our cars, and all our household items). He managed to get a transfer with his work and get a job in the UK, although the job in the UK was 2 hours from Hastings and 1 hour from UCLH, the hospital I was being transferred to.

I finally arrived in the UK and was admitted at the University College Hospital, London. I was cared for by Dr Lunn and their great Neurology and Neurosurgery department.

Whilst at UCLH, Dr Lunn had a great team looking after me during my very long stay. For 10 months I was in a coma and had no clue what was happening on the outside world, I didn’t know who was coming to see me, what they were saying and what they were doing. I was just in a very dark place.

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Finally in late June/July (after my birthday I left the ICU) and was moved to the special ward, but my memory and recollection were still very bad. I have pictures and a diary of family and friends coming to visit me, and taking me out, and talking to me – but to date I have no memory of that, even though they say I was responsive, but as much as I rack my brain to remember, it is just a big blank space in my brain. It’s a big part of a puzzle that I can never seem to fit anywhere, and remains blank and missing.

Even though my dad was poorly himself, he still made the journey from Hastings to London to see me and talk to the doctors to understand what was going on. He got my mum into the pattern of coming to visit me whilst the doctors were doing their rounds, and would call her when she went by herself.prithima 5 500x376 - Prithima's Story

This is one of the last pictures I have of me and my dad together. Unfortunately, my dad’s health deteriorated whilst I was in hospital and he passed away August 2017, peacefully with my mum and family by his side.

The doctors told my husband and family not to tell me about my dad in case it affected my recovery, as I was still very fragile. I was unaware my dad had passed away, and would ask my mum why my dad had not come to visit me. I would ring her at home and ask where dad was, but I was always told he was tired and sleeping. Mum kept saying “dad loves you lots and is missing you and wants you to get better soon”.

So I worked with the nurses, the staff, the physios and my Occupational Therapist Jane Richmond, who made me build my strength and helped me walk, talk, and write again. I had to learn to stand and be independent and be strong, because I was so weak from being bed bound for so long. Once I started getting my memory back I felt that I need to be strong for my daughter and I need to be strong to show my dad what a brave girl I am. I knew he would be super proud and was doing everything so I could show him my achievements.

Soon with the help of the amazing doctors, Occupational Therapist, nurses and amazing team, I started improving and was allowed to go outside with the nurses and my family.

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I kept getting stronger and thinking about how I wanted to be back to normal and strong again for myself and everyone. Soon I was able to eat by myself.

Slowly I got better, and my medications were reduced but there was still a lot from what I can remember, maybe around 30 tablets a day. One of the many medications I was on was steroids. This made me put on a lot of weight, which I’m still struggling to lose; this weight gain affects your confidence big time in every way possible.

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My husband and my mum asked the doctors if I could come home to spend Christmas there, and they agreed. Before this they decided that they needed to tell me that my dad had passed away.

So my mum, my husband and other close members of my family came and took me aside, and slowly explained that dad had passed away. And I think I shed a tear but nothing really sunk in, and I didn’t really understand what they were saying. So I just agreed and said that I understood and carried on with the day.

After that I went home for Christmas, and my brother and his partner prepared Christmas dinner like my dad would have done but still nothing felt right. Everyone said I’m doing very well and I will get back to normal soon. But still nothing made sense, I was back to this puzzle in my head where there were missing pieces.

Another hurdle I had to tackle was my daughter, we were very close before I was ill but when I returned home, she was very distant and was scared of coming close to me. She would let me change her or be close to her and that absolutely broke me to pieces. I couldn’t believe it and felt like my daughter didn’t love me anymore.

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Whilst in hospital, my mum had been mainly looking after my daughter because my husband was working far away. My brother and his partner helped her a lot with my daughter, my brother’s partner took my little girl under her arms and treated her like her own girls, and I will never be thankful enough. My brother was a great support to me when I came out of hospital and whilst I was there for my daughter.

My mum had been shuffling between the hospital and the nursery to pick up and drop my daughter in between hospital runs, and everyone at the hospital couldn’t believe how she managed to do so much, and be so strong after what she had being through.

My mum and my brother explained to me that they had made a memorial bench for my dad at the hospice where he passed away, and took me there when I was home so I could understand what had happened and start accepting it.

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My brother also waited for me to return from hospital so we could put my dad’s ashes to rest. My dad always loved the sea, so we decided to release his ashes in the sea. But doing all this and knowing everything, I still couldn’t understand that my dad had passed away.

All I kept asking is “WHY, why did he go?” And “why didn’t he come and see me? Why he didn’t wait for me to get better?” And I still to date blame myself that I couldn’t get better fast enough for him to see me, I just needed a couple of days, all I wanted is his warming loving comforting smile, telling me it’s ok, everything’s alright. I want to tell him so much and see him so much, I get very emotional whenever I sit and think. He is the one person in my life that I would have definitely like to have by my side at this time.

But this is something I’m taking my time in accepting.

When I was told about my dad, this was also the time the doctors explained about my ovaries and that I would not be able to have any children because my ovaries had been removed.

I never expected this with the encephalitis, and was totally shocked and just looked at my husband and didn’t have anything to say. I was born in Mauritius and my grandma had 8 children. Me and my cousins all grew up together, my mum and dad love children, and I love children too.

I used to tell my mum, dad and my aunties that I will have 8 children too: 4 boys and 4 girls. That was my wish, I knew it would not really happen but that’s what I always said.

When I got married I was ready for children, I wanted to have lots to give to my parents because they were already great grandparents to my niece. And they always spoilt kids, and would adorn all children in the family with so much love.

So this were my many shocks, hitting me where it hurts.

I didn’t know how to accept this news and I still don’t. I feel that I’ve let myself down, I don’t feel like a woman anymore, as wrong as it sounds, that’s how I feel. And I look at my daughter and see how much she loves playing with her little cousins, and I feel that because of me she can’t have a little brother or sister.

Every time I look at families growing, and little babies popping up everywhere, it just pulls at my heart. I miss to be a mum again and grow a bump, have a baby grow inside you for 9 months, and once the baby is born, all the joy, tears and love and laughter that comes with it.

Right now I’m starting to accept those big factors that I have lost in my life. But thank fully I have an extremely strong, supporting and loving mum by my side, alongside my best friend, my husband, my soulmate. I have very close members of my family who may be far away but are so close to me and are always there when I need them.

Today I am a stronger person, I have learnt that life can be taken from you and that you should appreciate every moment you have. And I have chosen to do just that, focus on people who are important to me and focus on my future.

I am and will be on medication for a long time, but this is something I have to accept. The two things I have constantly going round in my head are memories of my dad and the sadness of not being a mother again.

But I promise myself that I will put all my love towards my daughter and overload her with so much love, not too much that she gets spoilt but enough for me to feel content.

I don’t know what the future holds but I can say I am a stronger and wiser person who won’t be easily taken advantage of, and will be more strongly independent than ever. 

I am thankful to all the family that were there to support my mum and my family during our difficult times, and we will never forget all that you did.

prithima 10 375x500 - Prithima's Story

Your generous Donations allow IAES to continue our important work and save lives! 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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The Dynamic Brain in Autoimmune Encephalitis

The Dynamic Brain in Autoimmune Encephalitis

September 26, 2020 | Claudia Lopez-Lloreda, PennNeuroKnow

The plastic brain

Brain plasticity handout image Facebook Post 300x251 - The Dynamic Brain in Autoimmune EncephalitisIn autoimmune encephalitis (AE), the body generates antibodies that mistakenly attack neuronal proteins that are important for brain function. Among the most important proteins targeted in AE are neurotransmitter receptors1. Neurotransmitter receptors function as the “lock” for different neurotransmitters, like dopamine and serotonin, that act as “keys”. Neurotransmitters unlock these receptors and through this allows neurons to communicate with each other.

One defining feature of the nervous system that neurotransmitters play a key role in is brain plasticity. Brain plasticity, also called neuroplasticity, is the ability of the brain to adapt by changing, re-wiring, or making new connections between neurons. This is important because this plasticity in response to lived experiences is what enables behavioral changes, such as learning new things and forming new memories2. Research and anecdotal evidence show that learning and memory are affected in AE, which makes it important to understand what brain plasticity is and how it is affected in disease.

Brain plasticity: How does it work?

At the cellular level, plasticity is seen mainly by the change in strength of the connections between neurons, called synapses. This is known as synaptic plasticity and it can go two ways: synapses can strengthen, known as long-term potentiation (LTP), or they can weaken, known as long-term depression (LTD)2. Importantly, the quantity and function of neurotransmitters and their corresponding receptors are critical for synaptic plasticity. More neurotransmitter molecules and more receptors means that neurons can communicate better and more effectively, which allows for the strengthening of their connection.

Strengthening usually happens when two neurons synchronize their activity. One famous researcher, Donald Hebb, said it conclusively: “Neurons that fire together, wire together.” This usually happens in our brain in response to different experiences, but it can also be studied in the lab. This process is studied by artificially stimulating connections to induce either LTP or LTD2. Using a baseline, scientists then study how different interventions affect whether the connection strengthens or weakens. By doing this, they can see how different changes, such as a generation of autoantibodies, can change these connections.

Can autoantibodies affect plasticity?

Since we know that AE is characterized by autoantibodies against important neuronal proteins—specifically neurotransmitter receptors—scientists wondered whether these autoantibodies could affect synaptic plasticity. One study looked at this by treating mice with antibodies against one specific subunit of the AMPA receptor derived from AE patients3. The AMPA receptor is one of the locks for the neurotransmitter glutamate, which is important in excitatory transmission, the type of communication where neurons activate other neurons. The researchers found that treating mice with autoantibodies led to internalization of the receptor, meaning the cells took the receptor away from its normal location on the outside of the neuron. Inside the neuron, the receptor could no longer exert its function and the neurotransmitter lost its effect.

The mice treated with these human antibodies against AMPA receptors had impaired LTP in a specific pathway of the hippocampus, an area that is critical for the formation of memories3. This means that with autoantibody treatment from AE patients, the strengthening of the synapses did not occur as well as it did when mice were not treated with the antibodies. As a consequence, treating mice with these antibodies affected their learning and memory. The researchers saw that the impairments that mice developed with antibody treatment paralleled the strong memory impairments seen in disease.

Similarly, a group of researchers treated brain slices from mice with fluid derived from the brains of patients with AE4. This fluid had autoantibodies specifically against an important neurotransmitter receptor called the NMDA receptor (NMDAR), another lock for the same neurotransmitter glutamate. Once again, the antibody-rich fluid derived from AE patients impaired LTP4. Injecting fluid from patients with NMDAR encephalitis straight into the brains of live mice also blunted the ability of connections to strengthen5.

However, these studies were done in animals. In humans, studying brain plasticity is a bit trickier, since neurons are deep inside the human brain in humans and artificially activating them is not an easy task. One way it can be done is by pairing two activations. The first activation, called peripheral electrical stimulation, is done by giving a jolt of electrical pulses to peripheral nerves such as those in the hand. At the same time, the researchers non-invasively stimulate the area in the brain that connects with the peripheral nerve by using a technique called transcranial magnetic stimulation. By doing this, they can “look” at what is happening in the brain to see how this artificial paired activation leads to changes in synaptic plasticity.

Studies show that this type of stimulation in humans produces something similar to the plasticity seen in mice and in tissue slices6. One study applied transcranial magnetic stimulation to patients with NMDA encephalitis and found that plasticity was impaired when compared to healthy individuals6. Strikingly, the degree of impairment in synaptic plasticity was associated with disease severity. These studies suggest that the autoantibodies generated in AE can be detrimental to the important function of synaptic plasticity in the brain. Further, impairments in synaptic plasticity could be a contributing factor to the symptoms seen with disease.

What does this mean for recovery?

Brain plasticity is also a mechanism that the brain uses to recover from damage. After injury, the brain can try to find new ways to do things. For example, if an area that controls understanding speech is damaged, the brain can reorganize to change where it gets different speech information from. In this case, the rearrangement of synapses and the alteration of synapse strength could be a way the brain tries to respond to the injury mediated by autoantibodies in AE. As a treatment, activating plasticity has been considered for psychiatric disorders7. Different strategies include medication8 and even exercise, which has been shown to enhance plasticity9. Therefore, it is possible that plasticity could be activated to help patients with AE. However, more research has to be done to further understand how exactly these interventions could change brain plasticity in AE and potentially help people recover from the debilitating symptoms.

References

  1. Lancaster, E. (2016). The Diagnosis and Treatment of Autoimmune Encephalitis. Journal of Clinical Neurology, 12(1), 1. https://doi.org/10.3988/jcn.2016.12.1.1
  2. Amtul, Z., & Atta-Ur-Rahman. (2015). Neural plasticity and memory: molecular mechanism. Reviews in the Neurosciences, 26(3). https://doi.org/10.1515/revneuro-2014-0075
  3. Haselmann, H., Mannara, F., Werner, C., Planagumà, J., Miguez-Cabello, F., Schmidl, L., … Geis, C. (2018). Human Autoantibodies against the AMPA Receptor Subunit GluA2 Induce Receptor Reorganization and Memory Dysfunction. Neuron, 100(1). https://doi.org/10.1016/j.neuron.2018.07.048.
  4. Zhang, Q., Tanaka, K., Sun, P., Nakata, M., Yamamoto, R., Sakimura, K., … Kato, N. (2012). Suppression of synaptic plasticity by cerebrospinal fluid from anti-NMDA receptor encephalitis patients. Neurobiology of Disease, 45(1), 610–615. https://doi.org/10.1016/j.nbd.2011.09.019
  5. Würdemann, T., Kersten, M., Tokay, T., Guli, X., Kober, M., Rohde, M., … Kirschstein, T. (2016). Stereotactic injection of cerebrospinal fluid from anti-NMDA receptor encephalitis into rat dentate gyrus impairs NMDA receptor function. Brain Research, 1633, 10–18. https://doi.org/10.1016/j.brainres.2015.12.027
  6. Volz, M. S., Finke, C., Harms, L., Jurek, B., Paul, F., Flöel, A., & Prüss, H. (2016). Altered paired associative stimulation-induced plasticity in NMDAR encephalitis. Annals of Clinical and Translational Neurology, 3(2), 101–113.https://doi.org/10.1002/acn3.277
  7. Uscinska, M., Mattiot, A. P., & Bellino, S. (2019). Treatment-Induced Brain Plasticity in Psychiatric Disorders. Behavioral Neuroscience. https://doi.org/10.5772/intechopen.85448
  8. Nitsche, M. A., Müller-Dahlhaus, F., Paulus, W., & Ziemann, U. (2012). The pharmacology of neuroplasticity induced by non-invasive brain stimulation: building models for the clinical use of CNS active drugs. The Journal of Physiology, 590(19), 4641–4662. https://doi.org/10.1113/jphysiol.2012.232975
  9. Erickson, K. I., Miller, D. L., Weinstein, A. M., Akl, S. L., & Banducci, S. (2012). Physical activity and brain plasticity in late adulthood: a conceptual and comprehensive review. Ageing Research, 3(1), 6. https://doi.org/10.4081/ar.2012.e6

 

 

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Your generous Donations allow IAES to continue our important work and save lives!

seal - The Dynamic Brain in Autoimmune Encephalitis

 

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

 

Trivia Playing cards 3 FB 500x419 - The Dynamic Brain in Autoimmune Encephalitis

For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

 

AE Warrior Store 300x200 - The Dynamic Brain in Autoimmune Encephalitis

 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

Life Lessons from Eating an Acquired Mussel

Life Lessons from Eating an Acquired Mussel

September 16, 2020 | By Dominic McDonald

At the mature age of 19, I decided I needed a sabbatical to escape the stress of my first year at University. It was to be a European adventure, sailing along the Mediterranean, exploring the coastline, meeting new people, understanding different cultures and eagerly tasting amazing food. I might even learn to sail, as I was to accompany a family from Sydney, tutor their children and help where I could on the boat, during a year of sailing. I never learnt how to sail, however I did ‘acquire’ some life lessons from a rather memorable Albanian mussel.

My story is rather unique in being young, sick and alone in a foreign country—presenting neurological symptoms with no diagnosis and a rapid exacerbation over a matter of days. On a journey of self-discovery, I lost myself and contact with my loved ones in just a 32-hour ferry ride from Venice to Greece. I was left with the belief that I would die in a strange and isolating hospital, which I later learned was Patras, located in rural Greece. The trauma of those first days and the subsequent four weeks in a hospital in Athens, were the start of my battle with autoimmune encephalitis. It’s a battle I continue eight years later, one that has significantly changed the course of my life. 

The treatment and diagnosis of such an unusual condition in Greece was quite an ordeal, where specialists assumed the worst, treating it as a likely ‘drug-induced’ psychosis, which significantly hindered both proper treatment and the ability to return home. It was by a miracle that a neurologist from North Shore, Dr. John Parratt, was able to make contact and provide a possible diagnosis over the phone, allowing medical evacuation to Sydney (the first and hopefully not the last time I fly business), where I was treated for autoimmune encephalitis at Royal North Shore. I later discovered I had been admitted in Patras, presenting in a highly distressed state, as the illness quickly took hold and I dramatically lost consciousness. Without Dr. Parratt’s intervention, I probably wouldn’t have survived. I am so incredibly grateful he got me home and continues to manage my fluctuating condition. I have learnt the critical need for understanding distressed patients with neurological symptoms and the importance of early diagnosis and treatment of neurological conditions.

My diagnosis with a rare form of autoimmune encephalitis in extreme circumstances and the prolonged nature of my acquired brain injury—that includes seven separate acute episodes of encephalitis since 2012—have taught me that being a medical anomaly can pose difficulties. More importantly, for better or worse a brain injury changes your conscious state, and therefore shifts your perspective and understanding of the world. I try to see it as life with a new lens. These are my three life lessons, ones that I now use as a framework for life with an acquired brain injury.

Discover your ‘anchor point’ and lock it in your mind.

relapse neurology wardSince my first acute episode in 2012, it has been so important to have a clearly defined timeline with an endpoint, during each relapse. An anchor point set to bring back the mind whenever it drifts too far. Settling an overstimulated mind is challenging, and settling an overstimulated mind with a severe neurological inflammation brought on by encephalitis can be nearly impossible. An anchor point establishes clear parameters for the brain and mind. It is a point of clarity and certainty when the world seems completely foreign and you are full of confusion, stress and unknowns. During each episode, my anchor point may shift, depending on context and circumstances, giving me a point of reference when I haven’t slept for weeks and have lost consciousness. It helps to focus, settle the brain and emphasise a more present mind. Importantly, I never drift all the way back to the hospital ward of Patras in 2012, but I remain present with a known anchor.

A clear event for me is April 2019, my most recent acute episode. Unfortunately, it was my fourth acute episode in less than two years, an incredibly traumatic period, easily the worst period of my life. A period I didn’t think I could survive (as I would drift away at times) I kept returning to my anchor point as the one certainty in my life at the time. It can be enough to settle the panic, give myself security and help motivate me. It has been over a year since my last acute episode, and if I were to get sick again I would fix again to my anchor point, just as I did after my last episode.

Smile.

It is difficult to know when you are through the worst of a brain injury, or experienced its lowest point. The prolonged severity of any brain injury confuses the journey of recovery. A smile is the best starting point, even when you feel you have nothing to smile about, because it has the power to generate positive energy and a presence of mind that seems too difficult. The transition from patient to survivor for any brain injury is arduous, unstable and incredibly isolating, but a smile can empower an individual through this transient period and help share the burden. A smile in the face adversity gives you a resilience to the fight, and presence of mind that can find enjoyment through the trauma. Not necessarily enjoying your life or life circumstances, but finding enjoyment in any small interaction.

Learn to Sail.

Dominic McDonaldI set out on a journey, with the goal ‘learn to sail,’ and be part of a crew in an Atlantic crossing. Instead, I have learnt to sail the fluctuations of a brain injury, crossing a new ocean with a new crew of specialists, family and friends. Along the way I have discovered new emotions, new moods, incredible highs built on the waves of hope and the unbearable lows in the face of another acute ‘storm.’

The extreme waves of emotions and fatigue add such volatility to everyday life, that even planning a routine is incredibly difficult. I have been propelled into an ocean of complete unknowns, with more volatile waters and severe weather, and after so many years of navigating these fluctuations, my journey became more and more isolating. I felt I was alone with no direction, and no way to navigate myself out of the storm. I find the enduring isolation years after the initial event to be the most traumatic impact of a brain injury, because eventually your support crew continues with their own lives and you are left alone, unequipped to navigate yourself. 

I had my first relapse in 2015, three years after my first episode, since then I have experienced more frequent and severe episodes, with four episodes between December 2017 and April 2019. Each acute episode can be weeks in hospital with complete loss of consciousness and memory gaps. My condition had become so unstable with no time for recovery between the waves of each episode, that I had completely forgotten how to sail the fluctuations of my condition. I felt hostage to my illness, its unknowns, uncertainties and instabilities and, after a number of horrific years I forgot my anchor point, I couldn’t smile and found it incredibly difficult to find purpose in my life outside of my illness. I had lost the ability to sail through the fluctuations, bunker down knowing conditions would settle, and there would be days ahead for easy sailing. 

Just when I had nearly lost hope, I had a new friend come aboard: Captain, a two-year-old black Labrador Retriever, who has had guide dog training and is a qualified therapy dog. Captain has been the friend and the help I didn’t know I needed! I was determined to find a way through this, but couldn’t continue alone. Captain has been an amazing crew mate, always eager for walks and swims, and through his eagerness, I am beginning to find more of a routine and purpose. He has been instrumental in changing the tides.

It hasn’t been all smooth sailing, I still get overwhelmed by everyday life, but together we have more good days than ever before. Our relationship gives a sense that finally momentum is shifting and we are doing all we can to capture this change and enjoy the periods of easy sailing. From my experience, brain injuries create an immense separation at a number of levels: all you can do is try your best to navigate each wave, each storm, enjoy the good days and remember one small change can break that separation.

There is still a gap between what I can do and what I want to do. Living my life with the knowledge of these three lessons makes everyday life more enjoyable and gives me hope that one day this gap will begin to fade.

In summary, it can be incredibly difficult to quantify the initial damage and consequences of any brain injury from minor to severe. To then quantify its impacts years after the initial episode are nearly impossible. All I know is, no matter the severity of the injury there is a monumental shift in the person’s life, such a dramatic shift that creates a seemingly insurmountable gap to life before and life after.

I now know more about my brain, its function and its limitations, I know this brain is capable, I just need more people to take the time to understand, And then remember I cannot be held to the standard of a healthy brain despite appearances. I hope that all survivors of acquired brain injuries have the opportunity to live the life they intended, not defined by compromise, and the capacity to support the reablement of those who are unable to do so.

 

Your generous Donations allow IAES to continue our important work and save lives! 

seal - Life Lessons from Eating an Acquired Mussel

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Life Lessons from Eating an Acquired Mussel

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Life Lessons from Eating an Acquired Mussel 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

This is Seronegative Autoimmune Encephalitis, 1 Year Later

This is Seronegative Autoimmune Encephalitis, 1 Year Later

September 12, 2020 | By WhereAreMyPillows.com for the International Autoimmune Encephalitis Society

A few weeks ago, I celebrated the 1 year anniversary of my discharge from hospital.

There’s been tons of ups, as well as some downs in the past year—but ultimately, I write this to provide a message of hope to those that are having a hard time with autoimmune encephalitis (AE) right now. 

My journey began in 2014, when I suffered a flu-like illness after which I was never quite the same. For 5 years I lived with a mystery illness that was slow to settle in and occasionally remitted, but progressively robbed me of my key cognitive abilities. I dropped out of university (twice) and suffered countless periods where I felt like the living dead. 

The future became increasingly bleak, as I lost trust in my basic ability to think—let alone the capacity to ever make a living for myself.

Then summer 2019 came.

Through the haze, there’s one memory that sticks out: laying in a hospital bed for the first time, and looking over at my mom. I told her I thought this hospital stay was my last hope of ever getting better. 

Imagine the heartbreak she must have felt in that moment.

To her credit, she channeled my ominous words into sharpening her advocacy efforts. While my mind was adrift in a catatonic stupor, she fielded questions from a bevy of unhelpful specialists who looked at her with scrutiny and disdain. Being the determined woman that she is, she held her ground and didn’t let anyone push her around. 

My mom tells me at least 4 neurologists came by—and all were absolute crap. They either thought I was fine, or that I was a crazy malingerer. But thanks to her insistence that something was medically wrong, a specific psychiatrist was sought out as a consultant to my case.

I consider that one psychiatrist my angel: she fought for the PET scan crucial to my diagnosis, as well as the Rituximab a medical committee tried to bar me from accessing. I’m fortunate that my mom and psychiatrist never gave up on me, even after my inadequate response to the steroids and IVIG initially administered. At one point I felt like my life was over, but lo and behold: 7 weeks after my first Rituximab infusion, I started experiencing significant gains. By week 10, I had gotten about ~95% back to baseline. The end of 2019 and early 2020 are some of the best months I’ve ever experienced. 

I wish the story ended here, but the fact of the matter is that some challenges remain. I’m back on the mend via Rituximab again, after experiencing a relapse this spring. You can read more details about what’s happened since then at www.wherearemypillows.com.

Despite the setback, I’ve improved considerably from my worst points last summer, and consider myself lucky to have parts of my brain back I thought I had permanently lost. Though my recovery has stretched on longer than anticipated, the important thing is that it progresses upwards nonetheless.

In the meantime, I’m grateful to have a community of fellow AE warriors to fall back on. I want to shout a huge THANK YOU to the International Autoimmune Encephalitis Society and their lively Facebook group, which has provided me with endless emotional support and a pool of knowledge with which to fight my personal AE battle. It’s humbling to be in a position now to pay it forward and help others touched by AE—and to further this personal mission, I’m delighted to announce that I’ll be sharing my experiences in a new #WhereAreMyPillows monthly column. These will be published right here on the IAES blog!

While none of us want to be running this marathon, I hope that the burden of AE is a bit lighter knowing that you’re not alone. I got back on my feet after 5 years of misdiagnosis— a reality that seemed a mere pipedream just a year ago. Don’t give up and don’t lose hope!

 

wherearemypillows bio

WhereAreMyPillows is a seronegative AE survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram, and Twitter pages #wherearemypillows

 

Your generous Donations allow IAES to continue our important work and save lives! 

seal - This is Seronegative Autoimmune Encephalitis, 1 Year Later

 

 Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - This is Seronegative Autoimmune Encephalitis, 1 Year Later

 For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - This is Seronegative Autoimmune Encephalitis, 1 Year Later 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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