This post is a follow up to World Encephalitis Day: Where are we in 2022? For context, I’d encourage you to read that post first. Be forewarned that you should probably find another corner…
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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.
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…
What follows below is commentary on what I’ve noticed occurring in the AE world as a patient with an encephalitis-wearied set of eyes. ***Please take what I say with a grain of salt, do your own research, and talk to your own medical providers. I’m not an authority; I’m just a fellow AE survivor partially reflecting insights collected from others, and partially adding in a dash of my own spice.***