Introduction 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,…View Post
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.
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.
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.***
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.