Just thinking out loud, so ignore me. You have undboutedly thought of all this and more.
I read thru this and here's a running commentary of stuff that entered my head in order
MG? no not MG. Total autononic failure? Probably not but not entirely sure.
Then of course started thinking encerphalitis, something with the same mechasims as complex regional pain syndrome, something with NMDA receptors
and started wondering: what's the levels of adreniline and noradreniline dureing some of this? what's the levels of glutimate, and GABA?
Does an EEG pick up abnormal actiivity when overstimulated?
(obviousy no point checking orthostatic stuff when there's deconditioning)
and postitely most definitely, what are the results of a mayo clinic neuro antibody panel - any ANNAs at all?
and started thinking what can be tolerated to have an inroad -
is visiual imagery tolerated? (f yes, then we can figure out which to use)
are some aromas tolerated?
is the noise of an animal as bad as the stimulation of a human?
and also wondering, the less one has to lose, the more one may be willing to throw at the problem
what happens with gabapentin? (i only use topical so can't speak to oral)
immunoglobulins?
immune supression?
feel better or worse or no differnt with fasting?
what heppens if you say to a doc - I do NOT have ME I have been imprpoperly labelled . Find out what i have.
just remember hearing great words once that if there's no treatment for what you have, fight to get a different diagnosis.
shoot now i've forgotten the other what happens with treatment X's.
when i had an attack a few days ago, and even more so the one before it a couple weeks before, the biggest reason i didn' call for emergency help was not covid (despite being unvaxed) but the thought that i could not imagien being touched or even talked to since i was max bad and that would be worse. i think i would have died on the spot of a stroke.
sorry lost train of thought.
like i said, just ignore me.
buttons you can push for Yes, No , and STOP whatever the fuck you are doing right now and go away at once!