Who ACTUALLY treats autoimmune encephalitis? Part 2: My experience with interdisciplinary care teams

The first time I recovered in 2019, all I knew is that multiple neurologists failed me and 1 psychiatrist saved me. I had no understanding of what interdisciplinary care could offer an encephalitis patient until the middle of relapse #1, when you-just-have-adult-ADHD neurologist sneered at my claim that the non-sick version of me is high-functioning. She said I should have gotten neuropsychiatric testing done to prove this during the period in 2019 when I “claimed” to have recovered.

Gut punch.

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Who ACTUALLY treats autoimmune encephalitis? | Part 1: My experience with doctor shopping, a psychiatrist, and a dozen neurologists

Question: Who treats autoimmune encephalitis (AE)?

The traditional answer: neurologists.

The jaded answer: no one does.

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.

The 7 Stages of Receiving Medical Treatment, as Told by a Rare Disease Survivor

One day you’re at 60% capacity, feeling happy about the progress you’ve made towards recovery. That’s a far cry from the 5% you were in at the hospital when you were admitted for an acute attack.

But the next day, you’re back at 30%.

One day you’re in shock, having met a new doctor who not only acknowledged your deteriorating health but offered you the option of escalating treatment.

But the next day…

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

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.

Scrambled in the City

I’m walking down the street of a major American metropolis, bagel in hand, rushing to find a park bench so I can log in to Zoom. I look down at my feet, pause, and whip out my phone.

Perfect. This will do. *shutter click*

Leave it to a patch of dingy city sidewalk to embody my feelings of living with an inflamed brain.

Relapsing… again. Autoimmune encephalitis round #3: Let’s go 🥊🥊🥊

Autoimmune encephalitis (AE) is a nightmare.

Internists don’t want to touch it. Psychiatrists look on with sympathy. And most neurologists would rather not acknowledge it at all, unless scores of paraclinical investigations are screaming in their face.

So you might begin to imagine how dejecting it feels to be the one actually living with this illness.

The information on this site, such as text, graphics, images, and videos, is designed to provide a patient perspective on understanding and living with a long-lasting illness. It is for general informational and entertainment purposes only, and does not serve as a substitute for consulting with your own healthcare professionals or conducting your own research. It is not intended to serve as medical advice, or to be used to diagnose, treat, cure, or prevent any disease. While every effort is made to provide accurate information on the subjects discussed, no responsibility is assumed for any errors or omissions in the content. Always seek the advice of a qualified healthcare professional to assess and guide your medical care.

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