To some extent, we’re all trying to achieve the same goals.
Earlier diagnosis. Better treatment. Better outcomes.
But we’re not on the same page with respect to how to get there. Patients, caregivers, clinicians, scientists, nonprofits, obscure blog writers… when it comes to autoimmune encephalitis (AE), these stakeholders are conceptualizing the roadmap very differently.
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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.
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.
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…
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.
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.
