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

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

May 12, 2021 | By WhereAreMyPillows.com  

 Message from the IAES blog staff:

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

—–

 

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

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

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

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

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

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

#HospitalLife

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

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

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

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

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

AUTOANTIBODIES BE GONEEEEEE!!!

Wait… what?

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

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

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

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

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

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

Getting down to the nitty-gritty…

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

In my case: a brand-new person.

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

Suddenly, I was alive.

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

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

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

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

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

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

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

In Perspective

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

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

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

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

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

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

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

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

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

 

wherearemypillows bio

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

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

 

 

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

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

 

 

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

 

 

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

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

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

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

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

December 19, 2020 | By WhereAreMyPillows.com  

 

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

 

—–

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

The world that doctors live in…

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

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

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

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

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

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

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

….Versus the world that patients live in.

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

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

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

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

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

But right now I’m just bitter.

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

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

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

What happens when you relapse

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

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So… now what?

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

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

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

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

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

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

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

 

wherearemypillows bio

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

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

 

 

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

guidestar platinum logo 300x300 1 e1605914935941 - The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

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

 

 

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

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

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

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

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Prithima’s Story

Prithima’s Story

September 30, 2020 | By Prithima Sunasee

A NOTE FROM PRITHIMA’S HUSBAND, REELY 

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

—-

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

prithima 1 500x326 - Prithima's Story

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

prithima 9 376x500 - Prithima's Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

prithima 10 375x500 - Prithima's Story

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

seal - Prithima's Story

 

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

 

 

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

Trivia Playing cards 3 FB 500x419 - Prithima's Story

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

AE Warrior Store 300x200 - Prithima's Story 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

Life Lessons from Eating an Acquired Mussel

Life Lessons from Eating an Acquired Mussel

September 16, 2020 | By Dominic McDonald

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

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

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

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

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

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

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

Smile.

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

Learn to Sail.

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

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

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

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

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

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

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

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

 

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

seal - Life Lessons from Eating an Acquired Mussel

 

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

 

 

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

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

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

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

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

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


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

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