I think i might have encephalitis lethargica.

[bensmith]

Lethargy, sleep attacks, the desire to commit violence(i have plants i have nurtured for 5 years and i wanted to snap all of them recently, this is not normal for me) occular pain, muscle jerks when falling asleep, muscle tremors(could be cfs) staring into the distance, emotional deadoning, arm weakness, hot brain feeling. Sometimes i feel i will slip into a coma. Blank stares into the distance. Maybe like, delirium a bit.

This could be cfs though couldn’t it? My first sign of pem was extreme desire for suicide, maybe this is all just cfs? The only thing that has helped so far is bpc-157, which i know messes with dopamine, maybe it is el? Maybe my pem is destroying my brain?

I feel very on the edge right now.

 

[Alvin2]

The issue most doctors have with patients self diagnosing is that patients misdiagnose themselves/assume the worst or pigeonhole their symptoms after consulting Dr Google. Patients don't have the experience of seeing countless diseases, medical training or the ability to order or interpret tests. That said doctors are not infallible either and rare diseases are hard to diagnose even for seasoned docs unless its an easy to diagnose condition or you get lucky or happen upon the right specialist.

Both the Washington Post and the NY Times have a series about medical mysteries and many of them are very hard to diagnose diseases and most took many years to get solved.

All that said your symptoms started post covid and this is an emerging area of research. I don't know if this or narcolepsy or CCI or whatever is your diagnosis but the chain of events starts from catching covid hence that is the most reasonable place to start. Don't fall for the streetlight effect.

 

[crypt0cu1t]

Bro don't go down the encephalitis largica rabbit hole. I did the same thing before I was diagnosed with AE, Thinking I had Prion disease, ALS, Encephalitis Lethargica, subacute sclerosing panencephalitis etc.

If your illness started post covid, it's probably autoimmune in my opinion.

 

[bensmith]

@Alvin2 thanks, working on it still : /

@crypt0cu1t yeah thanks i hope not, at least i’m not the only one lol. Shit is scary as fuck feels like im losing my ability to have emotions and my brains on fire. Not to mention the like sleep attacks. Blah want some relief!