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.
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.
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.
I fully recognize my case of AE is grey. I have a relatively isolated, dementia-like presentation that is not detectable on an MRI or via standard CSF markers, but does involve vague EEG abnormalities and mixed hypo/hypermetabolism on a FDG-PET scan.
I understand why most neurologists struggle with this. They don’t want to risk hurting you with medications or procedures that come with potential side effects, and they’re used to treating patients with a more black-and-white picture.
But what I DON’T understand is the rampant gaslighting experienced by patients left, right, and centre within the AE community—not just by me. I went from capably managing 40-60 hour work weeks in early 2020, to having to bow out of work altogether. You can’t just peg that on residual symptoms leftover after my initial treatment in 2019. And some of the alternate narratives suggested to me, while convenient if true, were incredibly sloppy (ADHD—really?!) and left me with psychological battle scars I’d rather not have. For all the specialists I’ve seen, I actually have a relatively straightforward medical history; I can only begin to imagine the frustration felt by patients whose doctors remain fully adamant their symptoms are due to a comorbidity, and NOT autoimmune encephalitis.
It should not take 12 neurologists over 6+ years –with 4 weighing in with erroneous judgments while I was relapsing, even after the diagnosis had already been established the year earlier—to fix 1 AE patient. It’s really not that complicated. Yet our present medical system makes it so, stranding scores of AE patients who are left to needlessly suffer. My situation of misdiagnosis and mistreatment is not that unique, and that’s what troubles me most.
As for today: I’m not at baseline, I still have some unsteady days, and I still don’t have all of the maintenance medications I’ve been prescribed. Frankly, the follow-up care outside of the hospital has been a bit lacklustre; in the end, the panacea for AE care remains elusive. In a situation like mine, it’s still on the patient or caregiver to hound doctors’ offices, facilitate insurance appeals, coordinate communication between doctors, and take command of figuring out logistics for ongoing care. I’m run down. But I’m also keenly aware that I’ve already experienced a level of treatment and healing that many patients aren’t so fortunate to experience, and for that I remain incredibly grateful. Fingers crossed the treatments hold, and that the healing continues.
The major takeaway here? If you know in your gut that something is medically wrong, keep advocating for yourself (or your loved one). Dig deep inside yourself to keep going, until you find the answers that sit right with you. This may not always look like more treatment; there may not be anything further that can be done. However, many times there is—it just takes some serious persistence. That’s the ugly reality of AE today (one I hope to help change for the future). You might need to spend hours gold-panning for the right nugget of information and stomach some gut-punches from the medical community, but it can absolutely make a world of difference towards restoring your quality of life.
Believe me, I had my days I wanted to give in. But once the wallowing subsided, I kept turning back to my community. There are many out there, more resilient than me, who inspired me to inch forward whenever the going was rough. Get resourceful, and don’t be shy about reaching out to others—these were pivotal components to unravelling my own personal AE puzzle. You can find a list of AE-specific support groups here.
I hope this post benefits someone out there in the same way I’ve been fortunate to benefit from patients and caregivers on this journey alongside me. To those who have helped me weather the AE storm, thank you from the bottom of my heart ❤️️.
For more insight into what living with autoimmune encephalitis looks like, read more at my blog below or find me on Instagram, Facebook, or Twitter.
WhereAreMyPillows is a seronegative AE survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap.
Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook Page, Instagram and Twitter #wherearemypillows
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