Re:A boy, his brain, and a decades-long medical controversy
by bigcorp-slave on Wednesday June 16, 2021 @02:26AM
(#27525477)
No sleep apnea, tried that one. No ME/CFS investigation done yet. Immunological seems very plausible. Dysautonomia seems like potentially a good fit.
My feet are fine, so it can’t be SFSN, right?
I’d love a recommendation for helpful neurologists. Will send email. Thank you!
1. Unlikely but testing for sleep apnea, just to rule out since I’ve heard people with strange constellations of symptoms find improvement this way.
2. Testing for neurological autoimmunity - a paraneoplastic panel, neuronal antibody panel, anti-nmda receptor. There are a number of panels depending on the lab for these with some overlaps between them just check what they cover. These can be hard to obtain you need a doctor who groks them. Also can be expensive and sometimes difficult to have insurance cover but that’s usually helped if the doctor groks it.
3. A small fiber punch biopsy. (See Therapath for info, may also find a talk on YouTube called Small Fibers Big Problems by Dr Oaklander)
4. Investigate ME/CFS (probably already have) and dysautomomia (autonomic neuropathy, possibly indicated if biopsy positive).
5. I’ve just put my email in my bio. If you’re US based and want a recommendation for some helpful neurologists who can look for this stuff send me an email.