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

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

April 13, 2022 | By WhereAreMyPillows.com

Message from the IAES Blog Staff: 

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

—–

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

Introduction

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Reexamining the mechanisms underlying autoimmunity

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

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

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

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

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

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

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

Moving forward

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

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

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

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

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

wherearemypillows bio

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

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

 

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

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

 

 

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

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

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

 

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

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

July 14, 2021 | By WhereAreMyPillows.com  

 Message from the IAES blog staff:

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

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

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

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

—–

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

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

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

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

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

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

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

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

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

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

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

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

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

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

wherearemypillows bio

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

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

 

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

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

 

 

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

 

 

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

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

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

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

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

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

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

May 12, 2021 | By WhereAreMyPillows.com  

 Message from the IAES blog staff:

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

—–

 

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

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

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

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

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

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

#HospitalLife

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

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

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

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

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

AUTOANTIBODIES BE GONEEEEEE!!!

Wait… what?

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

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

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

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

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

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

Getting down to the nitty-gritty…

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

In my case: a brand-new person.

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

Suddenly, I was alive.

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

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

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

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

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

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

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

In Perspective

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

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

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

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

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

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

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

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

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

 

wherearemypillows bio

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

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

 

 

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

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

 

 

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

 

 

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

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

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

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

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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.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Autoimmune Encephalitis Trivia Playing Cards

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