Note: this post is the first in a series in which I answer how I finally got treated for autoimmune encephalitis (AE) of the seronegative—or possibly GAD65—subtype. Treatment started 5 years after I first got sick.
Stay tuned for post #2 coming later this week.
Question: Who treats autoimmune encephalitis (AE)?
The traditional answer: neurologists.
The official answer—under ideal circumstances—per a 2021 review article published in Neurology: experienced neurology clinics in partnership with other neurologic subspecialists, as well as psychiatrists, neuropsychologists, and physical medicine and rehabilitation providers. See below:
The jaded answer: no one does. Looking over at you, relapsed and/or seronegative friends
The real answer: a haphazard smattering of medical professionals who balance their knowledge of medical literature with sound clinical judgement and the needs of the patient.
Why the discrepancy in answers? Because the field is too new (circa 2007) to have it’s sh*t together yet.
7 neurologists later, a wild Pokémon psychiatrist appears
I got my life back in 2019 after falling sick in 2014. It was 5 long years of purgatory—of dropping out of a respectable undergrad program, moving back in with family, drifting from perplexed doctor to doctor, and watching my potential vaporize—before IVIG and Rituxan (rituximab) healed me back to 100% baseline.
Who demystified the puzzle to diagnose me? A pediatric psychiatrist. Who treated me? That same psychiatrist, who has now unfortunately earned a reputation as a black sheep amongst her local colleagues. Colleagues who lack a track record of healing patients to full and relapse-free recoveries, yet are somehow looked to as the AE experts in the region.
This psychiatrist did things that the 6 neurologists and 1 neuroimmunologist before her refused to do: order thorough investigations, evaluate my clinical picture against the latest information in medical journals, identify an organic cause for my symptoms, and ultimately write the orders for immunotherapy. Which surprises most people I tell these details to—it’s pretty unheard of for a psychiatrist to be the quarterback of directing AE care. I’m pretty sure she was going above and beyond her scope of practice as a psychiatrist (not to mention pediatric doctor) in not just overriding the pushback of her neurology colleagues but going to bat for me against the government to ensure I actually received the IVIG and Rituxan I needed. What’s even more remarkable about this is that it happened under a universal healthcare system, where it is much harder for doctors to “go rogue” as there is heavy oversight over how medical resources are allocated.
I am beyond lucky. She’s my angel.
My mom recalls a day at the hospital where, right in front of us, one of a handful of dismissive neurologists came by and asked the psychiatrist to justify her actions. She showed him a reputable medical journal that supported her rationale, only to be met with a raised voice telling her “psychiatrists have NO place diagnosing and treating encephalitis patients.”
Who knows what else she dealt with behind closed doors.
Who knows how many unlucky souls haven’t come back from AE due to animosity between medical colleagues, workplace politics, and ugly territorial disputes. And that’s on top of the misdiagnosis, lack of awareness, and medical negligence that still exists for AE patients today.
All of this to say: sometimes it just takes finding a single compassionate, egoless, and determined doctor, who is genuinely dedicated to healing their patient, to turn a sinking ship around so it can set sail again. It’s not always the distinguished specialist, the one with all the accolades in the world, who has the right answers for your unique situation. But you have to be seriously committed to staying the course, trusting your gut despite the accumulation of slamming doors, and persisting until you find the right doctor to help you.
For those familiar with my story, you already know my medical journey doesn’t end there. Things have been bananas for me since spring 2020, culminating in a recent stint of chemotherapy (Cytoxan/cyclophosphamide) that has pushed me from relapsing back into healing.
You would think that one would have a straightforward time finding medical care after being diagnosed and fully recovering once… but no, that’s not necessarily how things will unfold. Even if you are are fortunate to be in a position to seek out medical care from some of the most highly esteemed AE experts worldwide.
Before I go further, here’s my obligatory disclaimer to say read on with caution, and with the knowledge that my experiences differ from the majority. Those that are newly diagnosed today stand a good chance of avoiding the reality I write about below. Also, I am in no way giving out medical advice or saying that doctor shopping is necessary. As for me, I missed the boat on the “early and aggressive treatment” approach that is so widely cited as being key to a good outcome. I’m also a seronegative OR GAD65 positive patient depending on who you ask, both of which are underserved by the average doctor responsible for treating AE patients.
I hope those of you who have read this far never have to worry about whether or not a doctor will provide you with brain-preserving, life-saving treatment; as for the sizeable minority of you who continue to have issues with your medical team, the rest of this post is written for you.
In my case, it took seeing 5 more neurologists—one a neuro-oncologist, another a neuroimmunologist—to find appropriate treatment after relapse #1 in 2020. It wasn’t because I’m a difficult patient, or for fun and games, or because I have all the resources in the world to go shopping for doctors. It was born out of necessity due to a number of problems within the AE field, including:
- It is not always clear what constitutes a relapse vs. fluctuations during recovery. Though in my case, it couldn’t be more obvious: over a couple weeks I went from doing full-time work as a Communications Manager for a real estate developer, to being unable to find my way into a Zoom meeting and having to stop working altogether.
- Doctors have highly variable treatment styles. Some will not give out Rituxan unless you progress to being unconscious in the ICU; others will give it soon after diagnosis paired together with IVIG, especially with recent studies showing that those given Rituxan have a lower risk of relapse. Some slowly wean treatment after their patient has been stable for 2-3 years; others do it as soon as possible. In my case, I only received about 6 months of immunosuppression after I was first diagnosed (no shade to the aforementioned psychiatrist – she is one of my heroes and I know she did the best she could to treat me in a bureaucratic system that was weighted against her).
- A certain specialty – you already know which one I’m referring to – seems, in my personal experience and observation of other patient journeys, to have a perilous preoccupation with calling established diagnoses into question. I am all for due diligence, but it doesn’t make a lot of sense to rule out the diagnosis of AE in a seronegative patient for the simple fact they have a clear MRI and “allegedly relapsed” with Rituxan still active in their system (as I had a neuroimmunologist conclude). Neither does saying I never seemed to have AE at all but probably just have adult ADHD instead (as I had a different neurologist conclude).
The angry side of me wishes I could throw the dismissive doctors I’ve met into a simulated work environment with 25 less IQ points. For reference, the average doctor is reported to have an IQ of 125; normal/average intelligence is considered 90-109. After a week of that, maybe then they’d be more concerned with helping patients recover full cognitive capacity, and take cries for help during “alleged relapses” more seriously?
25 is the number of IQ points I gained back, as measured through repeat neuropsychiatric testing, after “doctor shopping” past some high-and-mighty big-name specialists to fix relapse #1. Who frowned at the idea of me seeking further opinions and treatment. So forgive me for my jaded views and having a tendency to cast doubt on the words of AE experts.
Let’s call a spade a spade: I was gaslit, just the same as so many other rare disease patients before me. And not just before diagnosis, when it might be forgivable for a multitude of doctors to miss catching the signs of a rare disease; but after diagnosis, after I had already recovered once, under distinctly uncomplicated circumstances.
Lifelong history of academic and extracurricular achievement. Healthy lifestyle, with 0 medical issues prior to 2014. Abrupt shift in neuropsychiatric status after a viral prodrome. Indisputable recovery—from college dropout and catatonic dud to bright and high-earning professional—once placed on immunotherapy, after 5 year of failed trials with psychotropic medications. No comorbidities. No other logical explanations besides autoimmune encephalitis—and then a relapse, once immunotherapies were withdrawn too soon.
Yet only 2 out of the 5 neurologists I consulted with between 2020-2021 saw things this way. The remaining 3 pulled out their illustrious thinking caps only to rewrite my reality and declare that my problems were rooted in:
- nothing medical;
- anxiety; or
- adult ADHD.
This is why I’m a proponent of getting a second opinion (and in select cases, doctor shopping) in situations where patients are disgruntled and not making progress towards living a reasonable quality of life. With the AE field lacking standardization and consistency, are you going to leave your fate in the palm of one specialist’s hands?
Some lack a choice. I know how heartbreaking that is; that was me for a time.
But not now—now, I’m grateful for those who helped me fix not just one relapse but two.
Stay tuned for part 2 of the series to be published later this week. To be notified when it comes out, leave your email below:
You may be interested in the following posts next:
Who ACTUALLY treats autoimmune encephalitis? Part 2: My experience with interdisciplinary care teams
The 7 Stages of Receiving Medical Treatment, as Told by a Rare Disease Survivor
The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis (A Rant)
What happens when your autoimmune encephalitis treatments aren’t working?
World Encephalitis Day: Where are we in 2022?
The 7 Ways to Piss Off Your Neurologist, as Told by an Encephalitis Survivor
Relapsing… again. Autoimmune encephalitis round #3: Let’s go 🥊🥊🥊
An exceptional post, that highlights the minefield of diagnosis and treatment in this area clearly.
Thank you. Yes, calling it a minefield is a good way to put it!