What are the different types of autoimmune encephalitis?

by Alanna | Dec 27, 2022 | PennNeuroKnow

December 28, 2022 | by Sophie Liebergall, PennNeuroKnow and IAES Collaboration

A message from IAES Blog Staff:

The staff at IAES is proud to present to all of you another wonderful article/blog from the amazing team at PennNeuroKnow. Since 2019 IAES has been extremely lucky to be in partnership with the PennNeuroKnow(PNK) team to help us all better understand complex medical issues related to AE and neurology in general. The talented PNK team continues to keep us up-to-date and help clarify the complexities we face each day along our AE journey, and we are eternally grateful! You can find out much more about this stellar group at: https://pennneuroknow.com/

——

Introduction

Receiving a diagnosis of autoimmune encephalitis can be a stressful and uncertain time for many patients and their families. And to make it even more confusing, doctors often don’t just give patients a diagnosis of autoimmune encephalitis, but rather anti-NMDAR or anti-Hu or anti-GABA_A encephalitis. There are many different types and subtypes of autoimmune encephalitis that can have distinct symptoms, underlying causes, and responses to treatment.¹However, the terminology that doctors use to refer to these different subtypes is complex and can sometimes feel like wading into a bowl of alphabet soup! Here, we will try to break down some of the ways that doctors distinguish types of autoimmune encephalitis to help patients and their families make sense of this complicated and rapidly evolving field.

What is autoimmune encephalitis?

Before we break down the different types of autoimmune encephalitis, it is important to understand what autoimmune encephalitis is. What do doctors mean when they use the term autoimmune encephalitis? The suffix -itis can be applied to any part of the body to describe an inflammatory state. So, when -itis is added to the end of the word encephalon (which is the ancient Greek word for inside the head), it means inflammation of the brain. Therefore, encephalitis is a word that describes any sort of inflammation in the brain.

But what exactly is inflammation? What does it mean when a part of the body is inflamed? Inflammation occurs when the body’s immune system is activated.² Typically, the immune system is activated when there are invaders in the body, such as bacteria or viruses. Once the immune system is alerted to the presence of this invader, it tries to eliminate the invader using a variety of different weapons. Some of the weapons that the immune system uses are called antibodies.³Antibodies act as signals for the immune system so that it knows where to direct its attack. One battalion of the immune system’s cell soldiers makes antibodies that specifically stick to the target. Then, the immune system sends another battalion of cell soldiers to eliminate the target that has been flagged by the antibody.

Even though the immune system’s main job is to mount attacks against invaders like bacteria and viruses, things can go wrong in the fog of biological warfare. Sometimes the immune system accidentally mounts an attack against healthy proteins in a person’s body. When the body’s immune system targets itself, it can result in what is called an autoimmune process (from combining auto-, meaning self, and -immune, as in the immune system).

Now we can put all of these terms together! When the body’s immune system accidentally targets healthy proteins in a person’s brain, resulting in inflammation in the brain, it is called autoimmune encephalitis.⁴

It is important to note that when the body mounts an autoimmune attack against the brain, it isn’t trying to target everyhealthy protein in the brain. Rather, it’s generally trying to target specific proteins that are found in the brain. When the immune system attacks these proteins, it can damage the proteins and the cells in which they are found. As a result, the type of autoimmune encephalitis and the symptoms associated with that autoimmune encephalitis are based on the type of protein that is targeted for attack by the immune system.⁵

What part of the brain is affected by autoimmune encephalitis?

Though we are still relatively early in our understanding of how the brain works, we do know that different regions of the brain control different brain functions. For example, some areas of the brain are dedicated to controlling movement, whereas others are dedicated to processing sensory stimuli. One way in which these different regions of the brain are distinct is that their brain cells can contain different proteins. This means that when the immune system mounts an attack against a protein in the brain, this attack is targeted to the regions in the brain where that protein is found. Therefore, the distinct types of autoimmune encephalitis target different regions in the brain and may affect different brain functions.¹

Doctors will sometimes describe a patient’s encephalitis based on which part of the brain they suspect is being attacked. Some common terms that you may hear a doctor use to describe autoimmune encephalitis include:

Limbic encephalitis: inflammation of the limbic system. The limbic system includes brain regions such as the hippocampus, amygdala, and hypothalamus that are involved in emotional regulation. People with limbic encephalitis most commonly have changes in their mood and memory, along with seizures starting in the limbic system.⁶
Brainstem encephalitis: inflammation of the brainstem which is the long stalk at the base of the brain that connects the brain to the spinal cord. The brainstem is the center of many important functions necessary for survival, so people with brainstem encephalitis can have problems ranging from abnormal eye movements to trouble swallowing or breathing.⁷
Encephalomyelitis: inflammation of the brain plus inflammation of the spinal cord. Sometimes patients with autoimmune encephalitis can also mount an autoimmune attack on their spinal cord. Inflammation in the spinal cord interferes with the sensory and movement signals that are sent between the brain and the rest of the body, which can result in symptoms like weakness, paralysis, numbness, or tingling.⁸

Is autoimmune encephalitis caused by a tumor?

Another way that doctors distinguish between the types of autoimmune encephalitis is by using the terms paraneoplastic vs. non-paraneoplastic encephalitis. In paraneoplastic autoimmune encephalitides, the reason that the patient’s immune system is attacking their brain is because they have a tumor somewhere in their body.¹³ A tumor, which is a growth of abnormal cells, can be one of the most common causes of autoimmune encephalitis. This is because the abnormal cells in a tumor can sometimes do strange things to proteins normally found in the brain. For example, tumor cells can place a protein that is normally supposed to be inside of the cell on the outside of the cell, or they can begin to make a brain protein in a different part of the body where it is not normally supposed to be made. This can confuse the immune system, which causes it to attack a normal brain protein that it would otherwise leave alone.⁹

In contrast to these cases of paraneoplastic encephalitis, non-paraneoplastic autoimmune encephalitis occurs when there is an autoimmune encephalitis but doctors can’t find a tumor anywhere in the person’s body.¹ In these cases, what is causing the immune system to all of a sudden decide to attack a healthy protein in the brain is less clear. The cause of cases of non-paraneoplastic autoimmune encephalitis is the subject of ongoing and future research by many doctors and scientists.

Which protein in the brain is the immune system trying to attack?

Perhaps the most specific way in which doctors can distinguish between different types of autoimmune encephalitis is by determining exactly which protein in the brain is being targeted. As discussed above, when the immune system mounts an attack against its target, it makes antibodies to specifically flag this target. These antibodies circulate in the blood and/or the fluid that bathes the brain. Therefore, if doctors can collect these antibodies, they can provide a clue about which protein the immune system is targeting.

As doctors and scientists have identified more antibodies involved in autoimmune encephalitis, they have started to name these types of autoimmune encephalitis after the antibody that is present. For example, one of the most common forms of autoimmune encephalitis is caused by the body mounting an attack against the NMDA receptor, which is a protein found on the surface of many cells in the brain.¹⁰ These antibodies against the NMDA receptor are called “anti-NMDA receptor antibodies” so these patients are said to have “anti-NMDA receptor autoimmune encephalitis.” Some of the most common types of autoimmune encephalitis that are named based on the antibody found against their protein target are listed in the table below.

Antibody	% of Cases with Presence of Tumor	Common symptoms
Anti-NMDAR	40% (varies)	Limbic encephalitis, psychosis, repetitive movements, unstable blood pressure and heart rate, decreased breathing, seizures
Anti-AMPAR	70%	Limbic encephalitis
Anti-GABA_A		Severe, prolonged seizures
Anti-GABA_B	70%	Limbic encephalitis, frequent seizures
Anti-Caspr2	40%	Limbic encephalitis, confusion, abnormal muscle tone
Anti-LGI1	<10%	Limbic encephalitis, seizures
Anti-Hu	>90%	Limbic encephalitis, problems with cognition
Anti-Ma2	>90%	Limbic encephalitis, brainstem encephalitis
Anti-CV2/CRMP5	>90%	Limbic encephalitis
Anti-Amphiphysin	>90%	Limbic encephalitis, widespread paralysis

Table Caption: Different antibodies that are found in patients with autoimmune encephalitis are associated with distinct symptoms and the likelihood that the disease is a result of having a tumor somehwere in the body. Adapted from Davis & Dalmau – Autoimmunity, seizures & status epilepticus (2013).¹¹

In some patients doctors are unable to find an antibody that is known to be associated with autoimmune encephalitis, even if the doctor is pretty sure that the patient’s symptoms are caused by an autoimmune encephalitis. This might be because either the patient’s immune system is not making an antibody, or that doctors don’t yet have a laboratory test that is capable of identifying an antibody associated with that patient’s disease. These cases of autoimmune encephalitis are said to be seronegative.¹² Doctors and scientists are still looking to identify new proteins and antibodies that are associated with autoimmune encephalitis in hopes of providing a more specific diagnosis for patients who would have previously been thought to have seronegative autoimmune encephalitis.

It is important to remember that autoimmune encephalitis can look different in every patient. For example, one patient may be diagnosed with anti-NMDA encephalitis after she has multiple seizures and is found to have an ovarian tumor. Whereas another patient may be diagnosed with anti-NMDA encephalitis after he has dramatic changes in his personality and memory, but doctors are not able to find a tumor. Nevertheless, breaking down a disease into distinct boxes can help guide doctors in their diagnostic and treatment decisions for an individual patient. And a greater understanding of the subtypes and causes of autoimmune encephalitis may be crucial for developing more targeted and effective treatments for this uniquely challenging disease.

References:

Dalmau, J. & Rosenfeld, M. R. Paraneoplastic and autoimmune encephalitis.
Chen, L. et al. Inflammatory responses and inflammation-associated diseases in organs. Oncotarget 9, 7204–7218 (2017).
Janeway, C. A., Travers, P., Walport, M. & Shlomchik, M. J. Immunobiology. (Garland Science, 2001).
Abboud, H. et al. Autoimmune encephalitis: proposed best practice recommendations for diagnosis and acute management. J Neurol Neurosurg Psychiatry 92, 757–768 (2021).
Lancaster, E. The Diagnosis and Treatment of Autoimmune Encephalitis. J Clin Neurol 12, 1–13 (2016).
Gultekin, S. H. et al. Paraneoplastic limbic encephalitis: neurological symptoms, immunological findings and tumour association in 50 patients. Brain 123 ( Pt 7), 1481–1494 (2000).
Tan, I. L. et al. Brainstem encephalitis: etiologies, treatment, and predictors of outcome. J Neurol 260, 2312–2319 (2013).
Dalmau, J., Graus, F., Rosenblum, M. K. & Posner, J. B. Anti-Hu–associated paraneoplastic encephalomyelitis/sensory neuronopathy. A clinical study of 71 patients. Medicine (Baltimore) 71, 59–72 (1992).
Dalmau, J. & Graus, F. Antibody-Mediated Encephalitis. N Engl J Med 378, 840–851 (2018).
Barry, H., Byrne, S., Barrett, E., Murphy, K. C. & Cotter, D. R. Anti-N-methyl-d-aspartate receptor encephalitis: review of clinical presentation, diagnosis and treatment. BJPsych Bull 39, 19–23 (2015).
Davis, R. & Dalmau, J. Autoimmunity, Seizures, and Status Epilepticus. Epilepsia 54, 46–49 (2013).
Lee, W. J. et al. Seronegative autoimmune encephalitis: clinical characteristics and factors associated with outcomes. Brain awac166 (2022) doi:10.1093/brain/awac166.
Rees, J H. “Paraneoplastic Syndromes: When to Suspect, How to Confirm, and How to Manage.” Journal of Neurology, Neurosurgery & Psychiatry 75, (June 1, 2004): ii43–50. https://doi.org/10.1136/jnnp.2004.040378.

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

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

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. 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.

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

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

image - What are the different types of autoimmune encephalitis?

How does the brain heal from autoimmune encephalitis and why is there so much variability in the healing process?

by Alanna | Dec 6, 2022 | PennNeuroKnow

December 7, 2022 | by Kara McGaughey, PennNeuroKnow

A message from IAES Blog Staff:

The staff at IAES is proud to present to all of you another wonderful article/blog from the amazing team at PennNeuroKnow. Since 2019 IAES has been extremely lucky to be in partnership with the PennNeuroKnow(PNK) team to help us all better understand complex medical issues related to AE and neurology in general. The talented PNK team continues to keep us up-to-date and help clarify the complexities we face each day along our AE journey, and we are eternally grateful! You can find out much more about this stellar group at: https://pennneuroknow.com/

——

The holy grail! The million-dollar question! How long will it take to get rid of AE, to heal from AE…when will we feel and act ‘normal’ again? Why do we not understand more of the healing process’ from a diagnosis of autoimmune encephalitis?

Kara McGaughey and the team at PennNeuroKnow help us further understand just how complex and individual our brains are!

——

Introduction

If you break a bone, your expectations about the healing process and how long it might last will vary depending on the nature and severity of the fracture. For example, a small fracture will come with a completely different timeline for recovery than a compound fracture (where the force of the break causes the bone to pierce through the skin).

Just like broken bones, no two cases of brain injury are exactly the same and the timeline of the healing process depends on the nature and severity of the injury. As such, when we consider healing from brain injuries, like autoimmune encephalitis (AE), the diversity of diagnoses and symptoms leads to a diversity of recovery trajectories, which can make navigating the healing process a confusing and isolating experience. Here, we dive into this diversity, exploring what healing from AE looks like, why the process takes so long, and why it varies so much.

How does the brain heal from autoimmune encephalitis?

“I felt like a robot controlling my body for the first time – speech, thought and movement all under shaky manual control. I felt like my brain was being reacquainted with my body.”

— Alexandrine Lawrie on AE recovery¹

Autoimmune encephalitis (AE) is a collection of related conditions in which the body’s immune system produces antibodies that mistakenly attack the brain, causing inflammation. In order to begin the healing process, treatment is needed to shut down the overactive immune system, remove the antibodies mounting the attack, and reduce brain swelling.^2-3 To accomplish this, doctors typically rely on a handful of treatments options:

Corticosteroids to reduce brain inflammation/swelling and immune system activity.
Blood plasma exchange to remove and replace the harmful antibodies circulating in the blood (which can find their way into the brain).
Intravenous immunoglobulin (IVIG), which includes helpful antibodies isolated from the blood plasma of thousands of healthy donors.
Immunosuppressant medications (like Cyclophosphamide and Rituximab) to directly suppress the immune system, if necessary.^2-4

Steroids, blood plasma exchange, intravenous immunoglobulin, or a combination of the three represent the most common defense against AE.^2,4 These first-line treatments can be helpful for stopping the immune system’s attack on brain tissue and reducing inflammation. Corticosteroids, for example, reduce brain swelling by preventing the production of inflammatory proteins by immune cells. These steroids also help to restore the integrity of the blood-brain barrier, a protective lining that shields the brain from inflammatory cells and harmful antibodies that may be circulating in the bloodstream.⁵ In AE the blood-brain barrier can spring leaks, which allows antibodies from the bloodstream to penetrate the brain and wreak havoc.⁶ Closing up any leaks in the barrier that formed as a result of AE disease progression is a critical first step in the healing process.

However, recovery from AE can take time and is often not an abrupt rise and fall of symptoms (Figure 1, left). Instead, while many people do respond to available treatment options, the initial period of healing usually falls short of complete, giving way to a longer and more complicated recovery trajectory (Figure 1, center). For example, first-line therapies fail to resolve symptoms in about 50% of patients with AE, which means that additional and prolonged treatments are often required to suppress the immune system and give the brain an opportunity to repair and recover.⁴ In these cases, doctors turn to second-line therapies, like immunosuppressants. While having steroids on board promotes brain healing by stopping the leakage of antibodies from the bloodstream into the brain, immunosuppressants, like Rituximab, go after the cells that make the antibodies in the first place.⁵ When given long-term, Rituximab can be effective at reducing symptoms and keeping AE in remission.^2,4

pnk symptoms - How does the brain heal from autoimmune encephalitis and why is there so much variability in the healing process?

Figure 1: Rather than a simple rise in symptoms that is quickly attenuated with treatment (black line, left), the timeline of healing from AE often comes with a series of ups and downs (green line, center). The height of these highs and lows depends on many factors, such as the specific AE diagnosis (i.e., the type of antibody causing the attack and the brain areas involved) and the time between symptom onset and treatment. As such, each AE patient’s path to recovery looks different (right).

While therapies, like Rituximab, can be incredibly effective, outcomes are still highly variable. Because no two cases of AE are exactly the same, no two recovery trajectories are either (Figure 1, right). Both treatment options and outcomes often depend on details of the AE diagnosis, such as the type of antibody involved. For example, a recent study of 358 patients with AE demonstrated that people with anti-NMDAR antibodies, LGI1 antibodies, and CASPR2 antibodies respond differently to Rituximab immunotherapy.⁷ These groups of patients with AE caused by different antibodies not only reported differences in symptom relief, but they ultimately reached different levels of day-to-day independence. Nevertheless, regardless of treatment approach and AE diagnosis, early and aggressive therapy is consistently associated with better outcomes. This means that as diagnostic tools and treatments improve, more people with AE have the opportunity to heal.²

How long does the process of healing from autoimmune encephalitis take?

“Good, bad, up, down, round and round;

I feel as though I’m on a merry-go-round.

Full of uncertainty if it will ever stop spinning;

Full of frustration as I remain on my couch sitting.

It’s going to be alright; it’s going to be okay; I will continue the fight day to day.

I will keep the hope and learn to cope;

I will continue my way up this slippery slope with hopes of support and love of some sort.”

— Anonymous on living with AE⁸

Since people tend to differ in their response to AE treatments, they tend to recover at different paces. For some, AE symptoms decline steadily with continued immunotherapy, leading to recovery within a couple months. Others experience persistent relapses, leading to a recovery timeline on the order of years (Figure 1, right). Research studies show that most patients continue to improve 18 months to 2 years after starting treatment, but there are some people with AE who experience ongoing and life-changing symptoms.⁹

Similar to how some types of AE respond better or worse to particular treatments, AE diagnosis also affects the timeline of recovery and the risk of recurrence. A recent study followed up with AE patients 3, 6, and 12 months after starting treatment, assessing and comparing their symptoms using a measure of the degree of disability or dependence. Researchers and clinicians found that after three months, two thirds of patients with anti-LGI1 or CASPR2 antibodies recovered to “slight disability” compared to only 30% of patients with anti-NMDAR or other antibody-based AE.¹⁰

This persistence of symptoms among patients with anti-NMDAR vs. anti-LGI1 or CASPR2 AE may come from the fact that different AE antibodies carry different risks for relapse. For example, the risk of relapse within two years for anti-NMDAR AE is 12%.⁹There are other AE diagnoses, like anti-AMPAR AE, where the relapse rate is even higher, pushing 50-60%.¹¹ This increased risk of relapse is thought to stem from the fact that patients with anti-AMPAR AE often have psychiatric and memory dysfunction that make them less likely to keep up with medications. However, while it may be more prevalent for some types of AE than others, relapse is not a given. These same studies show that patients who receive (and continue) with first-line treatments have a lower risk of recurrence relative to untreated patients.¹¹ Risk of relapse is further decreased in patients who have been given both first- and second-line therapies.^5,9This clear payoff of continued treatment suggests that as we continue to make improvements to AE therapies, there is potential for the percentage of patients reaching recovery to continue to increase.

All in all, vast differences in AE diagnoses and symptoms lead to lots of variability in treatment options, the healing process, and recovery timelines. This diversity of AE trajectories makes setting expectations for the healing process especially difficult. It also highlights the resilience of AE patients, their families, and their support systems who tirelessly endure and advocate despite prolonged uncertainty.

“A dear lady friend of mine (with the same illness) said this great quote that I reflect on frequently:

‘Not every day is good, but there is good in every day.’

And that has been absolutely true.

Each day presents itself with its own challenges and even though I don’t know what the future holds,

I am most calm when I focus on the good one day at a time.

–Amy on her AE journey¹²

Work Cited:

Lawrie, A. My experience with autoimmune encephalitis: A year of recovery. The Health Policy Partnership (2022). Available at: https://www.healthpolicypartnership.com/my-experience-with-autoimmune-encephalitis-a-year-of-recovery/. (Accessed: 25th October 2022).
Dinoto, A., Ferrari, S. & Mariotto, S. Treatment options in refractory autoimmune encephalitis. CNS Drugs 36, 919–931 (2022).
Abboud, H. et al. Autoimmune encephalitis: Proposed best practice recommendations for diagnosis and Acute Management.Journal of Neurology, Neurosurgery, and Psychiatry 92, 757–768 (2021).
Dalmau, J. & Rosenfeld, M. R. Autoimmune encephalitis update. Neuro-Oncology 16, 771–778 (2014).
Shin, Y.-W. et al. Treatment strategies for autoimmune encephalitis. Therapeutic Advances in Neurological Disorders 11, 1–19 (2018).
Platt, M. P., Agalliu, D. & Cutforth, T. Hello from the other side: How autoantibodies circumvent the blood–brain barrier in autoimmune encephalitis. Frontiers in Immunology 8, 442 (2017).
Thaler, F. S. et al. Rituximab treatment and long-term outcome of patients with autoimmune encephalitis. Neurology: Neuroimmunology and Neuroinflammation 8, (2021).
Fitch, A. AE Warrior Personal Stories Archives. Autoimmune Encephalitis (2022). Available at: https://autoimmune-encephalitis.org/category/ae-warrior-personal-stories/. (Accessed: 25th October 2022).
Titulaer, M. J. et al. Treatment and prognostic factors for long-term outcome in patients with anti-NMDA receptor encephalitis: An observational cohort study. Lancet Neurology 12, 157–165 (2013).
Seifert-Held, T. et al. Functional recovery in autoimmune encephalitis: A prospective observational study. Frontiers in Immunology 12, 641106 (2021).
Leypoldt, F., Wandinger, K.-P., Bien, C. G. & Dalmau, J. Autoimmune encephalitis. European Neurological Review 8, 31–37 (2013).
Amy. Amy’s story. The Encephalitis Society (2021). Available at: https://www.encephalitis.info/amys-story. (Accessed: 25th October 2022).

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

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

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

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. 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.

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

A Mother’s Wish for a Mighty Miracle’s 7th Birthday

by Alanna | Nov 23, 2022 | AE Warrior Personal Stories

November 24, 2022 | By Janine Samuela-Carasus

Introduction from the IAES Blog Team:

As we wrap up caregiver awareness month and in the spirit of this season’s giving of thanks, the staff at IAES wish to share with you this beautiful story of hope and the true power of those that care for us the most. Each AE Warrior is here today because of those that care for and love us. We are thankful beyond words. We hope you find this story as inspirational as we have, and we truly hope you all have a wonderful Thanksgiving!

To read more of Zoe’s story and her family please enjoy the first blog in this AE journey: https://autoimmune-encephalitis.org/never-give-up-miracles-happen-every-day/

—–

My name Janine Samuela-Carasus. I am 29 years old and from the Philippines.

Five years ago, in the middle of August 2017, our toddler that was almost two years old was diagnosed with anti-NMDA receptor Encephalitis.

We were stuck in a pediatric ICU unit for three weeks with Zoe and then, literally, lived in the hospital for the longest two months of our lives. As you can imagine, hundreds of tests and procedures were done every single day to try and figure out what was happening to our precious little girl. Our hearts were broken by every single negative result. No one knew what was happening to our girl. She seemed to be getting sicker and sicker each day.

Bills began piling up. All we understood was that her condition continued to worsen each day until she was not responding anymore. But with all this negativity, there was never a moment, a day, or a week that I thought of giving in and giving up. Never did a second go by that we lost hope that things would get better. With constant prayer, the help of the Lord, and the vigilance of our brilliant doctors, we kept hope alive.

Eventually, we were able to bring Zoe home although she was in a non-responsive vegetative state. We had no idea or any medical assurance that she would recover and regain her strength again and be the precious girl we knew and loved.

For me, it was a mix of emotions. I was happy we were finally home and terrified of what the future would bring all at the same time. I worried if I would be strong enough for Zoe and if I would be able to help her. I did know one thing for certain, even if it took her forever to recover, I would be there. I knew even if it meant sacrificing my own life and personal dreams, I would be there. And I did. Never did I leave her side, nor did I sleep away from her even for a night. I, religiously, made her blended food and fed her via a feeding tube for months. I took her to doctor’s appointments, therapy sessions, and every appointment that was necessary. I made sure Zoe was and felt loved every minute of every day and spoke to her all the time as if nothing was wrong.

All our prayers were answered. Zoe’s recovery was a long slow two-year road that we all traveled together. We watched her slowly improve, we cried with her when the therapy was hard until she got to the point to be able to face the world again!

To date, our daughter is back to being her best self. Her gross motor and cognitive skills are significantly improved. She has been able to overcome her stranger anxiety and started attending formal school. We are very excited for her to spread her wings and begin to fly. She will be bringing with her the scars of a well-fought past showing how strong and resilient she is. Our family will be right by her side!

Our fight and Zoe’s fight do not end here. AE could happen anytime in her life again. It can happen to anyone. I will always be proud of our story of faith, strength, and love. We plan to always fight for AE awareness so everyone can get diagnosed quicker and not have to go thru all the pain we had as a result of this terrible disease.

Zoe turns seven years old this month. I want Zoe to read and understand our story, her story. Zoe may not be able to remember all aspects of her AE journey but thru this story, I hope she understands, in her heart, that we, as a family, are one. And we will conquer everything that comes our way!! ❤

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

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

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

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.

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.

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

Continuing My Way Up The Slippery Slope: A Poem

by Alanna | Sep 27, 2022 | AE Warrior Personal Stories

September 27, 2022 | By Angie Fitch

Introduction from the IAES Blog Team:

The staff at IAES is proud to share with you a poem written by an amazing AE warrior that has been battling AE since the Fall of 2020. Each one of us feel the emotions, the ups and downs and roller coaster like ride AE takes us on. Thank you, Angie, for so eloquently putting pen to paper the feelings we all share!

——-

Good, bad, up, down, round and round.

I feel as though I’m on a merry-go-round.

Full of uncertainty if it will ever stop spinning; Full of frustration as I remain on my couch sitting.

I just want to live.

I just want to die.

I just want to do more than just survive.

I just want this nightmare to finally subside.

Convincing others and myself to remain positive and hopeful, when deep down inside I feel the opposite and woeful.

Confused, angry and sad is what I feel; But never reveal; All I can do is hope that I heal.

Why me, why now, why at all? The pity party sets in as I continue to fight and pray that I don’t give in.

The fatigue, the limitations, the pain and loss of ambition; The debilitating life that I have been given.

I will live; I will thrive; I will ultimately win and survive; This is what I tell myself; This is what I tell others as my pain remains undercover.

My strength then comes back; It’s going to be alright; it’s going to be okay; I will continue the fight day to day; I will keep the hope and learn to cope; I will continue my way up this slippery slope with hopes of support and love of some sort.

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

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

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.

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.

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

My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis

by Alanna | Aug 23, 2022 | AE Warrior Personal Stories

June 23, 2022 | By Reyna Felix

Introduction from the IAES Blog Team:

It is with great pleasure that IAES presents the story of one of our mighty Warriors. Reyna Felix, in her own words, explains the events that finally lead to her diagnosis during the beginning of a worldwide pandemic that left her alone without family and friends by her side at the very beginning of her AE journey. Her story was picked up by a few TV news channels and lead to an article written about her struggles in the Barrow Neurological Foundation newsletter. The link to this article is below. The Barrow Neurological Foundation strives to advance neurological research, patient care and provide education to help save lives.

Read Barrow Neurological Foundation Article

My name is Reyna and I am 29 years old. I have been married for 5 years (together for 11), I have worked as a 911 dispatcher for the past 7 years, and I am a dog mom to a fun rescue pup. I love to read, hike, exercise, travel, cook, and learn new things.

I am also a survivor of anti-NMDA receptor Autoimmune Encephalitis. Like most patients, my diagnosis was not easily found. The search for what was wrong with me included weeks of struggle for myself and my family. As you’ll read about in the article, I was dismissed from hospitals or left against medical advice. I spent time in a psychiatric facility, and eventually was correctly diagnosed and began the treatment process which led into the recovery process I am now in. I am missing many months of life from my memory, which is a common symptom of this disease. I received my diagnosis in April 2020 which was at the same time as a pandemic began around the world. This compounded the struggles experienced by my husband and family. Hospitals had restrictions on people accompanying patients in emergency rooms, ICUs, rehabilitation facilities, etc. and I was in no condition to be responsible for myself during the worst of my symptoms. There was about a 40-day period where my husband couldn’t be with me in person which increased the emotional stress of my condition for him. A teratoma was located and removed, I received a few IVIG treatments, and then I received two weeks’ worth of everyday Plasmapheresis which significantly improved my condition. It was during this time that I began to “wake up.” I spent two weeks becoming more alert, learning how to eat on my own, write, speak, walk, etc. during inpatient neurological rehab. I was discharged to return home with restrictions such as 24/7 supervision and outpatient therapies such as speech, physical, and occupational therapy that continued for 3 months. In June 2020, I started rituximab treatments that I continue to receive twice a year.

I continue to work on my mental and physical health, and I receive testing to ensure I am doing well by my doctors such as neuropsychological tests and cancer screenings. In September 2020, a local news channel picked up my story and did a short interview about Autoimmune Encephalitis which led to another news channel completing a story on me for my first World Encephalitis Day in February 2021. My neurologist shared with me that these two stories were shared amongst other doctors and hospitals and contributed to more awareness and for clinical studies needing to take place. More studies and awareness for this condition means that, someday, people will be diagnosed and treated properly which will lead to better outcomes for more people. I am not someone who enjoys attention. I used to keep my life private but all I hope for from opening up about my experience is to help others get proper treatment, raise awareness for medical professionals and other people to understand more about the disease, and to show other patients and families that successful recovery is possible.

Autoimmune Encephalitis came into my life swiftly and had the potential to destroy it, but it has not won. My life looks differently now but I am alive. I have bad days and good days, but life is full of ups and downs that we can move forward through. While a lot of our symptoms and experiences can be similar, I think it’s important to remember that we are each individual so it’s also good to remind yourself to not compare your own personal progress and recovery to other patients.

To all my fellow warriors, we’ve got this. You are loved, you are strong, and you deserve to be happy and alive. To all our caregivers, families, friends, medical professionals, etc., thank you for what you do to help us each day. Additionally, I hold those who have passed from Autoimmune Encephalitis and their families close in my heart.

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

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.

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.

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

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

by Alanna | Jun 21, 2022 | AE Warrior Personal Stories

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.

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

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

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.

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.

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

Jackie Stebbins’ Book Release – Unwillable

by Alanna | Jun 7, 2022 | AE Warrior Personal Stories

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.

My 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

Purchase Book on Amazon

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

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

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.

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.

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

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

by Alanna | May 25, 2022 | AE Warrior Personal Stories

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.

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

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

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.

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.

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

The Darkness of a Brain on Fire

by Alanna | Apr 26, 2022 | AE Warrior Personal Stories

April 27, 2022 | By Chelsea Wagner

Numbers, 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.

Even 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.

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

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

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.

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.

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

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

by Alanna | Apr 12, 2022 | WhereAreMyPillows Monthly Column

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:

exercising all these options;
overlapping some of them; and/or
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:

The first doctor that saw the patient in the emergency room performed a spinal tap and believed the issue was neurologic rather than psychiatric.
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.
The previously seronegative patient turned seropositive during a relapse, suddenly lending credibility to the diagnosis and making treatments more accessible.

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.

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 Instagram, Facebook, or Twitter.

Read More at WhereAreMyPillows.com

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 Page, Instagram and Twitter #wherearemypillows

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

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

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.

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.

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

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

by Alanna | Jul 13, 2021 | WhereAreMyPillows Monthly Column

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.

Sign up for AE Tuesday Tries

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 .

—–

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.

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 Instagram, Facebook, or Twitter.

Read More at WhereAreMyPillows.com

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 Page, Instagram and Twitter #wherearemypillows

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

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.

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.

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

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

by Alanna | May 12, 2021 | WhereAreMyPillows Monthly Column

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 Instagram, Facebook, or Twitter.

Read More at WhereAreMyPillows.com

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 Page, Instagram and Twitter #wherearemypillows

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

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.

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.

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

The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

by Alanna | Dec 19, 2020 | WhereAreMyPillows Monthly Column

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.

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.

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 Instagram, Facebook, or Twitter.

Read More at WhereAreMyPillows.com

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 Page, Instagram and Twitter #wherearemypillows

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

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.

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.

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

Caregiver Tribute

by Alanna | Nov 25, 2020 | Blog

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:

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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

A Day of Living with Autoimmune Encephalitis

by Alanna | Nov 6, 2020 | AE Warrior Personal Stories

November 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.

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.

This 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!

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.

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.

Introduction

What is autoimmune encephalitis?

What part of the brain is affected by autoimmune encephalitis?

Is autoimmune encephalitis caused by a tumor?

Which protein in the brain is the immune system trying to attack?

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

Introduction

How does the brain heal from autoimmune encephalitis?

How long does the process of healing from autoimmune encephalitis take?

Work Cited:

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

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

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

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

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

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

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

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

Introduction

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

Reexamining the mechanisms underlying autoimmunity

Moving forward

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

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

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

#HospitalLife

Wait… what?

Getting down to the nitty-gritty…

In Perspective

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The world that doctors live in…

….Versus the world that patients live in.

What happens when you relapse

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

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

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

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

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

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.

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

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

So… now what?

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

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

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