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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. 

Trivia Playing cards 3 FB 500x419 - Jackie Stebbins' Book Release - Unwillable

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. 

libya matney art - Psychosis or Something More? A Family's Search for Answers

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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. 

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.  

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Through the Eyes of Mom

Through the Eyes of Mom

March 23, 2022 |By Luz Neira Alvarez

A message from the IAES blog staff:

The staff at IAES is proud to present to you a poetically and beautifully written blog from a mother to a daughter with AE! This shines a light on the heartbreak, caring and love AE brings forth in those that care about us most!

 ——–

The wind caressed your face in the freedom, flying was your passion, not just living every day for 12 years, but imbuing passion in your brush strokes, mixing colors was your entertainment, how can you not reminisce about fulfilling the limits of your imagination, you created more than a surprising image. Keeping your body constantly in motion freed ideas, you visited new and beautiful paths, constantly envisioning and planning but….

Little dove from a thousand and one stories…. who interrupted your path? I don’t often see your amazing characteristics anymore. I have been waiting for a long time for your visits, your song, your magical touch on the paper when you flap your wings. I’m tired of waiting and you have not returned. In my dreams I hear your singing, sad and confused but faint. In your stead someone else has arrived. It looks like you, but I look, and I look again and question if it’s you. And if it is you, you have come back hurt, hard to recognize and with a white feather on your head. Suddenly, I could see in your eyes a flame and I could see how your brain was engulfed by it. What is happening? I asked. I hugged you and I could enter an unknown world. I could see how you ran, and the fear took over you. I could see how your heartbeat desperately and all your organs were affected. You wanted to be in control of everything, but it was impossible. The uncontrollable movements did not leave you alone for a second. Everything was different. I could see how your shaking made it so that your color mixes and brush strokes went the opposite direction than what you desired. Your emotions were confusing, but no more description is necessary. Just by looking at you I could see how you fought so many obstacles trying to fight for yourself, but you couldn’t. I started to try to understand what you were going through but it was hard. Even through the unknown, I vowed to help you out of this situation. I looked at one of your legs, stiff and rigid. I tried to move them, and I found a two-letter message, A.E. It can’t be! That was my reaction, but I wasn’t afraid. When I finally understood it’s meaning, I understood your reality. Since that moment, I haven’t stopped fighting for you. I sheltered you with my faith and I declared with the love of a mother that the giver of your life you re-create each part of you. It would take some time, but so it has been.

I’ve flown with you to different places with hope. You have endured painful situations, but I see your scars starting to heal.

Today, I can see how my little giant, with scars all over your body and brain, has re-learned everything again. To me, this is not an obstacle but an opportunity to do it again, and better than the first time.

You get up and have problems walking. Sometimes you hurt yourself again, but we help you get back on your feet. Today, I see your feathers, hopes, dreams, courage, strength, and desire to live.

You are the paint for those that need art in their life. Your experience becomes the path to understanding for the new birds following you. Your strength motivates those that need it the most. Your life shows the entire world that there is no limit for human beings. It shows that starting again is an opportunity, that our differences are what makes us unique, that our weaknesses become strengths.

Strength! We are not alone. We are the best warriors and protagonists in this unknown world.

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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. 

Trivia Playing cards 3 FB 500x419 - Through the Eyes of Mom

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 - Through the Eyes of Mom 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Falling through the looking glass…

Falling through the looking glass…


March 9, 2022 | by Rachael Muggleton

In May of 2020, I was a healthy, vibrant, smart, loving, pre-med student at Penn State, nicknamed the ‘mayor’ of my large friend network … until I fell acutely ill. Within 7 days of hospital admission, for what seemed like some type of stress induced altered mental status, I became catatonic. My mom watched in horror as her daughter’s light rapidly dimmed; losing a piece of what defined me each day. By day 7, I no longer spoke or appeared to recognize anyone, my heart rate became unstable, I could no longer walk or eat, and my kidneys began to fail. I was rushed to the University of Rochester Medical Center (URMC) with a preliminary diagnosis of Anti-NMDAr Autoimmune Encephalitis (AE) – an illness my family had never heard of, but one unfortunately they would get to know very well over the next six months of my horrific journey. 

IMG 5128 225x300 - Falling through the looking glass...Full disclosure — this part of my story comes from my mom; I don’t remember anything from my admission until fuzzy memories of my time in inpatient rehab 5 months later. By the time I reached URMC I was catatonic, seizures were starting to take over. My mother described the surreal experience as ‘seeing our beautiful Rachie rapidly falling through the AE ‘looking glass’ – a tumbling, bouncing, free fall which lasted for days, weeks, eventually resulting with me being placed on life support for months’. 

Timing is everything, right?! It was during COVID lockdown, visitation was not allowed. My family was no longer able to be by my side. For 42 days, physicians and nurses cared for me while in a medically induced coma; trying to quell the relentless seizures. My mom sat on the virtual sidelines, distraught, making decisions regarding PIC lines, arterial lines, sedation, feeding tubes and a tracheostomy – decisions she never imagined she’d be making for her child, who outside of a tonsillectomy, was the picture of health. Without the communication, compassion, trust and love I received from the URMC team, my mother said she wasn’t so sure she would have been able to get through those first 42 days. They were her eyes, ears, and most importantly, heart. 

IMG 5127 225x300 - Falling through the looking glass...When restrictions finally lifted and my parents were able to be by my side, they witnessed firsthand what a cruel, relentless illness AE was. There is no official playbook. My mom, a person who prefers order and predictability, was at a loss watching the team trying to control an illness that twisted and turned, never letting up. AE laughed at us and didn’t care how desperately we wanted it to release its grip. During this acute phase, one of my Neuro-intensivists explained his view on Anti-NMDAr AE (after treating a handful of cases each year) to my mom – ‘It comes out of nowhere, attacks HARD, stays as long as it pleases, eventually leaves, rarely returns. Our job is to treat Rachael with what we know works and keep her alive until it leaves”, and they did just that. I received steroids, plasma pheresis, IVIG, Rituxan and when things still seemed to be stalled, Cytoxan. I was also placed on a strict KETO diet, which in some pediatric patients has been proven effective in reducing/eliminating certain type of seizure activity. 

By mid-August of 2020, my mom tells me, “Our ‘Alice’ ended her free fall and SLOWLY started to reemerge!”. Day by day, small pieces of me started coming back. Eventually, the ICU staff took me out to the children’s garden at URMC (safety protocols in place (!)) to see my brother Andrew for the first time in 4 months (pictured)! 

My family and team celebrated each breath on my own, swallow of water, baby step, new word, and smile! When it was finally time to leave my nurturing Neuro-ICU ‘nest’, the team through me a dance party — sending me off to inpatient rehab in style! Since I have no memory of that time, I’m thankful it was recorded! Taylor Swift’s ‘Shake it Up’ will forever rock as my survival song 😊! 

IMG 5135 300x225 - Falling through the looking glass...

My dance party send off!

I was released from the hospital in October 2020, just short of 6 months. While my journey was far from over, I was on my way! I still needed to be weaned (carefully) from 8 different anti-seizure medications, regain my cognitive functions and physical strength and dexterity. Through the work of an amazing rehab team and sheer determination, I made my way back. By the summer of 2021, I was taking college calculus II and preparing for my college return in the fall. 

IMG 4404 225x300 - Falling through the looking glass...But here’s the best part of my story! In December 2021, I spent a week in the URMC Neuro-ICU, only this time NOT as a patient but rather to shadow the amazing physicians, nurses and professionals to learn firsthand the world of intensive care neurology. As a result of this shadowing, I’m sure they hope I choose Neurology as my specialty (maybe?!), but FAR more was gained from this experience! Rarely do providers, nurses, and staff get to see the results of their amazing efforts, and a recovered AE patient rarely gets to come back to see their heroes in action — Life came full circle. 

I finished my fall semester (Deans List!) and as I write this, and I’ve returned for my final semester at Penn State. I’ll begin studying for the MCATS with the goal of medical school in 2023 (maybe URMC?  😊). Autoimmune Encephalitis was a cruel thief who tried to steal me and subsequently a year of my life, but as the Mad Hatter said to Alice, ‘If you knew time as well as I do, you wouldn’t talk about wasting it’. I’m not about to waste it!! 

My mom reminds me often; I have a story to tell! I think it’s a story of a young woman falling through the looking glass — finding beauty, love, compassion, and competence all along her journey. However, her name isn’t Alice, it’s Rachael. 

Never. Lose. Hope ❤️. 

IMG 5129 300x225 - Falling through the looking glass...

August 2021, me, mom, and stepsister Kaitlyn 

 

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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. 

Trivia Playing cards 3 FB 500x419 - Falling through the looking glass...

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 - Falling through the looking glass... 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

The Episode

The Episode

November 25, 2021 | By Diane Wong

On this day of Thanksgiving in the US and in honor of Caregiver Awareness month, the staff at IAES wish all of you a blessed and thankful day!

We are honored to share with you a poem written by a very special caregiver of one of our members. The poem is written by Diane Wong, the mother of AE warrior Alanna Wong. This poem highlights the depth of love and despair caregivers feel on our behalf… Alanna’s AE went undiagnosed for many years until 2021.

She wishes to connect with others travelling this same path and shares her journey on Instagram @alanna_wong and on Facebook  @AlannaWongLife1

—————–

The Episode

 

Today my daughter lost her soul.

There is no emotion.

There is no understanding.

There is only sham rage.

A rage she does not control but

that controls her.

It is directed at me only because

I care for her.

If she were alone, it would be directed

at thin air.

I love her with my entire being.

 

Today my daughter sleeps.

The sleep is not restful.

The dream is a nightmare.

It lasts for days, or weeks, or months.

Life for her is lonely.

Life for her is cruel.

She is a prisoner in her own mind.

Can you imagine the torture she must endure?

I love her with my entire being.

Today my daughter is swollen.

Her face and eyes are puffy.

Her pupils are dilated.

Her sclera is yellow.

Her tongue is thickened.

Her body is bloated.

Her color is gray.

Her heart palpitates.

She cannot care for herself.

She is vacant.

She is distant.

She is unsure.

She wonders, “Am I dead or am I alive?”

“Is this real, or am I dreaming?”

Her short-term memory is destroyed.

Her relationships are destroyed.

Her life is destroyed.

I love her with my entire being.

Today my daughter asks, “Why was I put on this earth?”

She says, “I can’t do this anymore.”

“I don’t want to live.”

“I want to die.”

“I want peace.”

“I want to be in heaven with God.”

Tears roll down my face too!

I can’t answer her questions.

But I continue to give hope.

“It will get better,” I say

“It will go away one day.”

“You will live the life you desire and deserve.”

I love her with my entire being.

 

Today my daughter went for help.

The hospital staff makes assumptions.

How can the medical field not understand an organic illness in the

Brain is no different than an organic illness in the heart, or the

pancreas, or the lungs?

They ask, “Why are you here?”

“There is nothing we can do for you.”

Then they call social workers in.

If we’re lucky, my daughter won’t be committed.

I can care for her better than any psych ward.

What a shame!

I wonder why they’re even in the

business of helping people.

I go home to care for my daughter alone.

Isolated from the world.

I love her with my entire being.

Today my daughter begins life again.

Her soul returns.

She is young, maybe 3, maybe 5, maybe 10.

She’s cute and sweet.

She’s funny and mischievous.

She’s loving.

Her emotions return.

She can care for herself again.

She can read again.

She listens to music.

She is waking up from this long, awful nightmare.

I love her with my entire being.

Today I hear the words, “Mom, I’m awake.”

My sleeping beauty returns.

The words are bittersweet.

Sweet because we know she’s back with us again.

Sweet because she can live again.

Sweet because she can function again.

Bitter because she’s lost her memory.

Bitter because she lost more time.

Bitter because she lost herself.

Some memories come back in flashback form.

Which itself is torture.

In healing comes pain.

But we’ve already been through so much pain.

When will it end?

Maybe this will be the last one.

I love her with my entire being.

Happy Thanksgiving FB 500x419 - The Episode

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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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A Letter to Mom

A Letter to Mom

September 29, 2021 | By Jeri Gore

The staff at IAES is proud to share with you a letter by none other than our Blog Division Head, Jeri Gore! Her compassionate, strong, and thoughtful spirit shines through these words addressed to her mom in this heartfelt and insightful piece. We learn not only of AE’s far-reaching impacts on families, but of the joy and opportunity that can await AE Warriors after surviving the worst parts of the illness.

We hope you enjoy this opportunity to learn more about Jeri’s LGI1 story and what drives her to be such a hard-working, dedicated member of IAES! 

—————–

“If we accept the science of the law of Conservation of Energy, “Energy cannot be created or destroyed, it can only be changed from one form to another.” ― Einstein

In other words, the total amount of energy in the universe never changes, although it may change from one form to another. Energy never disappears, but it does change form. It isn’t a far leap in realizing that love, the most powerful form of energy, is eternal.

~~

Dear Mom,

It has been a while since I have written you a letter. I apologize. There is a lot to tell you and talk about. I suppose the emotion of it all made it tough for me. Still, no excuse, you are my Mom and I love and miss you dearly and always will.

I know you probably know ALL about what is going in our lives but, boy oh boy, do we need to have a chat! The grandkids are doing great, and all are busy. Another is going to be getting married, one went off to college and your eldest grandson and his wife are going to have a baby boy this coming November. Just think of it, you would be a great grandmother. I know, you are so excited about this! Bro and I are doing fine as are Mitch and Marina. Keeping track of the kids and their lives is fun and exciting. They would have you laughing as they always did.

We made it up to the cottage in Canada this summer after the long 18 months or so of Covid restrictions and we could not be happier being here in the place that you loved best next to sunny south Florida.

I was standing near the stone we placed in your honor, in front of the cottage facing the lake and I figured it was high time I told you all about me. To talk about the disease, I have. To tell you about the organization I try and do my best to be a part of, and to help to try to ensure that there will come a day when no one needs to write to their Mom about this disease. To help ensure Autoimmune Encephalitis is a term, a disease, that is known about and easily diagnosed and treated.  

Mom, I have Autoimmune Encephalitis anti-LGI1. Big word I know. Strange as heck disease for sure. In 2018 and more into 2019 I started having odd symptoms. My brain felt foggy. Sometimes I would be looking at someone and just have a blank look in my eyes. Sometimes I was mean. At times I would repeat things. Sometimes I walked kind of funny and made weird noises. It was like I had dementia. I then had seizures. Lots of seizures. It was super scary for everyone around me. I was in the hospital a lot and I was finally taken to a great hospital in Philadelphia near where we live. A wonderful neurologist at that hospital knew all about Autoimmune Encephalitis and has taken good care of me. I am doing well now. I try and participate in as many clinical trials as I can to help further research and find out more about AE. I joined an organization called IAES or the International Autoimmune Encephalitis Society to help, in my small way, to get the word out about AE. No one needs to go thru what so many with AE do. No families and friends need to go thru what your grandchildren, Mitch, Bro, Marina and all of our friends did before I was diagnosed. I know, I know you would tell me NOT to pack 25lbs in a 5lb. bag. You said that to me all the time. But, Mom, for this, for AE, I must. There has been some research that leads scientists to believe that for some folks there may be a genetic link to the type of AE I have. I have to do everything I can to ensure others get this info and to get this information for your grandchildren and generations to come. I must do this for you.

Mom, you passed away ten years ago. We were told and we believed you had dementia. You were 81 years old. You started showing symptoms of neurological issues 5/6 years prior to when you died (right around the time of this last family picture taken in 2007). You were relatively young, and those symptoms came out of the blue. I know hindsight is always 20/20 but I cannot say, in my heart, that you did not have some form of AE. 

You simply started showing signs of dementia-like behavior. This is one of the things many with AE have and show. We will never know.

We will miss you always. And I will do my damnedest to make sure no one ever needs to write a letter like this to their Mom in the future.

Mom, thanks for the chat. I promise not to wait this long to write and talk again. I hope you are doing great. I hope you are smiling down at us and have that twinkle in your eye. I would give anything to see it in person and to hold your hand. I’ll be sure to write about the upcoming baby and wedding and all the goings on with a young college kid. You would be laughing like crazy with everything that goes on with the other grands as well.

By the way, your cottage is as amazing as always.

And I hope you understand why I do what I do.

As always, love you forever and a day…

~Gig

Jeri gore - A Letter to Mom

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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. 

Trivia Playing cards 3 FB 500x419 - A Letter to Mom

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 Letter to Mom 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Daring Daisy Part 4

Daring Daisy Part 4

August 11, 2021 | By Shadazah (Daisy) Brown

The staff at IAES is excited to present the fourth in the blog series by a mighty AE Warrior in her ongoing quest to get all of herself back! Previous posts in Daisy’s journey are linked below:

Part 1: https://autoimmune-encephalitis.org/post/?highlight=Shadazah%20Brown%20

Part 2: https://autoimmune-encephalitis.org/my-continued-story-about-having-autoimmune-encephalitis-2/?highlight=Shadazah%20Brown%20

Part 3: https://autoimmune-encephalitis.org/daisys-ongoing-journey/

 

Being in and out of various hospitals has become second nature to me. The hospitals and staff are like my second home and family in many ways. Between getting weekly infusions and having issues with high and low blood glucose levels due to AE has me in various hospitals all the time. I had surgery last year to put an arteriovenous (AV) fistula in my arm. The surgery and recovery process were difficult.  The twenty staples used to secure the fistula and the discomfort took at long time to heal from and then to work properly. It is now used for my weekly plasmapheresis infusions! My AV fistula and I are like close dependent friends!!!

I am starting to understand what things I can and cannot do and am trying my best to remain positive. Some days are better than others, but I have found that when I feel a bad day coming or feel down, I can listen to music, write, and talk to new and old friends. I have met many wonderful new people while on this road to getting better and many old friends from my childhood call and check in on me often. My new and old friends are like sisters and brothers to me, and it is wonderful to have them to talk to.

Sometimes I do feel sad or feel like my 20’s is flying by, and I am only able to watch and not actually participate. Sometimes AE makes you feel mad or heartbroken. Sometimes AE is difficult for those around you, and they come and go from your life. But each morning when I open my eyes and wake up to another new day and new possibilities, I feel blessed.

I am learning to have patience with this brain disease. Each one of us with AE is different and we all go thru different stages. I am learning to manage ‘me’ and I am determined to get all of ‘me’ back!!

Daisy 2 272x500 - Daring Daisy Part 4

daisy 1 1 271x500 - Daring Daisy Part 4

 

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 - Daring Daisy Part 4

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 - Daring Daisy Part 4 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Raising Awareness of AE During the Recovery Period

Raising Awareness of AE During the Recovery Period

June 9, 2021 | By Elly Knaggs

Message from the International Autoimmune Encephalitis Society Team:

The staff at IAES is proud to present Part II in the blog series by AE Warrior Elly Knaggs. Following Part I of her AE blog series this past February, Elly decided to submit a press release about her struggle and to help raise AE awareness! Please find links below to this press release and Part I in her amazing and inspiring story!

Doctor’s thought a Queensland mum was having a pandemic breakdown. They were wrong:

https://www.9news.com.au/national/autoimmune-encephalitis-doctors-thought-queensland-mum-was-having-a-pandemic-breakdown-they-were-wrong/3d04d5ef-c30b-4c5a-8167-a02a162e77cb?fbclid=IwAR0SNDmjtjITH3OtYli3QxW1aQ_AtGhvvau0Y8gSmqrYbHvO0FwsRNRb6cs

IAES Blog Part 1:

https://autoimmune-encephalitis.org/magical-demon-of-a-brain/

——

 

INTRODUCTION

It’s been about five months since my last blog entry. Medical progress has been slow. But….positive progress on many fronts has been made! I submitted a press release regarding AE and my first blog and the story has received national press coverage here in Australia!  I’ve been stable on my current medications and I  refuse to back off or wean off the meds for fear of returning symptoms.

WHAT LIFE IS LIKE FOR ME

elly knaggs 2 139x300 - Raising Awareness of AE During the Recovery PeriodIt’s funny how quickly life can change with a disease of the brain such as AE. One minute you think you are working and recovering and  the next minute you seem to be falling down the rabbit hole again.

Let me back-track and begin where were left off:

Since my last blog (Part I) I had been granted the opportunity to work two days a week as a hairdresser. The challenges I faced during those first few weeks were hell. I had lost the ability to mix hair colour, understand hair colour formulas, read hair colour cards and perform colour corrections. Each afternoon I would have seizures, brain fog, mental exhaustion, physical exhaustion and mental breakdowns from how exhausted I was. I wanted to give up. I  felt immense stress about something I had been so talented at. This really tore me down. However, each week I managed to regain the skills I had lost.  The afternoons were becoming easier on my body and mind. After six weeks, I was able to manage three staff members and function as I once did as a hairdresser. But was I really? In my world I was managing. I was gliding through life and feeling so confident. I even took up volunteering one day a week at a nursing home. If you remember, I am a nurse and the goal has always been to get back to nursing. However, to the outside world and to many people, my improvements were not how I perceived them to be.  Sadly, I was not improving at all. In fact, in many respects, I was no better then when I began my AE journey. That is what I think is most sad about  Autoimmune Encephailitis; your brain no longer works as it once did and self perception sometimes changes dramatically.  I was told I was being irrational in the salon. My memory was dreadfull and I had a huge fit at work.  Sadly, the lady who owned the salon had to let me go. This was a huge shock and I was devastated. It took me several  days to realize she was right with her decision.  I am still too early in my treatment and recovery to even think of taking on such tasks like working in the environment I was in. I still have  much time ahead of me to allow further healing. To be honest,  it was the reality check I needed. I need to give my brain time to rest and to heal. Time and patience are my friends and that is what this disease takes!

I was diagnosed with frontal lobe brain damage due to AE.  The symptoms and issues I was having and still do have may explain why I could not see what was happening in the work place.

Being diagnosed with  frontal lobe brain damage knocked me back mentally.  I felt that my world was crashing down. And I felt if only the medical profession had believed me for the four months they left me with an inflamed brain, would I have brain damage? But I know I cannot dwell on what was and what was not.  I can move forward in a positive way and try and use my brain and increase my daily activities!  “use it or lose it” as the saying goes!!

On another positive note, the neuropsychiatrist assured me that with the right medications, frontal lobe damage can be helped. Of course, brain damage will always be brain damage but the brain is amazing and can create new pathways with the right therapy and medications. This process may take months or years. I, also, know that during this time and process I’ll need to manage the body changes and side effects different therapies and medications may cause or induce.

At times, I feel  the medical system, both with their help and lack of help has played a big part in this. I am now at a point where I feel my conversations with friends and family are consumed by medical terminology. I can no longer hold normal conversations. At times,  I no longer want to leave the house. I no longer want to keep friendships as I feel I am burdening people. I guess that’s what happens when you dive down the rabbit hole of a chronic illness and the mental aspects that can follow.  I have now found a new respect for others suffering the same  challenges. While I sometimes dwell in my sorrow, I do see a positive bright light sometimes. Yet at other times it is hard to see the light through the storm. I am looking towards new beginnings. I am thinking of  buying a push bike and hopefully finding new friends to enjoy fresh air and exercise with.

NEW SPECIALIST

I have a new specialist on the list of doctors I see. I have welcomed aneuropsychiatrist to my team.At one time I rolled my eyes at and refused to think about neuropsychiatry. After all I had spent 11 months refusing mental health referrals. Little did I know neuropsychiatrists help deal with the psychiatric and physical conditions relating to brain illness’ such as AE, encephalitis, Parkinson’s, MS, trauma, strokes and movement disorders. This specialty works well within the grey areas of neurology and psychiatry and helps to ‘marry’ the two for the benefit of the patients.

The neuropsychologist helps me work with and through my limitations and issues I have due to the frontal lobe damage. Frontal lobe damage is where the executive functioning happens in the brain. I am told this area of the brain helps to control, emotions, sleep patterns, involuntary movement and my ability or inability to organize my thoughts and life. For example, sometimes I have the emotional stability of a 16 year old that is being unreasonable. At times I loose my ability to judge a situation or I can act irrationally. I can become aggressive and/or agitated. This can happen when I am tired, over stimulated, am in an unfamiliar place or I have to process alot of information such as at a doctor’s visit. At times my body jerks due to the frontal lobe damage. This can happen during the day or night.  And my sleep patterns can vary to wanting to sleep all the time or not at all.

This doctor helps via therapy and medications. Of course the meds come with side effects and they may work for some and may not for others. Anti seizure medication is what has been helpful for me.

WHAT’S NEXT AND THE NEVER ENDING SEARCH FOR ANSWERS

elly knaggs 225x300 - Raising Awareness of AE During the Recovery PeriodAt times I wonder. How did we get here? Nobody knows. What is wrong with me? Nobody knows. If we cannot find how we got here? How can you fix me? I feel the medications I am on are simply masking something more sinister. I have spent incredible amounts of money, time and energy on my health and trying to get better. Maybe  I should be focusing and trying to accept where I am, how far I have come and positive ways to get better mentally and physically.  Let me ask you, if you were me what would you do? Would you accept this or forever search? I feel as though I never want to give up and I will always search for answers to help figure out AE!

The doctors are baffled as to why I cannot wean off the medication without all the neurological symptoms returning. I have asked all these questions many times. The bottom line is awareness and research needs to happen to be able to more fully answer the questions for me and for all with AE. We simply need to move forward and help to find the answers as to why the body is attacking the brain. 

THE FUTURE

As for my dream to become a nurse, I feel at times it is slowly slipping from my fingertips. Right now, I cannot work in a high functioning job such as nursing due to the damage my brain has incurred. So, I will put all things into perspective. Nursing is not my top priority yet. Getting well is. And in time I hope to pursue nursing and hope never to give up on that dream!

To be continued……………….

elly knaggs 2 226x300 - Raising Awareness of AE During the Recovery Period

 

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

guidestar platinum logo 300x300 1 e1605914935941 - Raising Awareness of AE During the Recovery Period

 

 

 

 

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 - Raising Awareness of AE During the Recovery Period

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 - Raising Awareness of AE During the Recovery Period 

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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IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Autoimmune Encephalitis Trivia Playing Cards

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