I am curious to know other’s stories of post viral neuropathy.

Hi folks,

It's been great to stumble onto this community -- I've learned a lot from reading everyone's stories. I was hoping to ask for some advice dealing with a similar situation, possibly post viral neuropathy (though not for sure -- no official diagnosis). This is fairly recent for me & dealing with it has been confusing so any advice from the experienced would be so helpful.

Symptoms:
Following a stubborn but not intense respiratory illness (swollen throat for 1-2 months, but otherwise not even a fever or fatigue), I started developing paresthesias in my arms &/or legs. So I might variously feel like they're vibrating, being electrocuted, or about to go numb. The worst part is probably sleep, since perhaps 2-3 nights a week I wake from sleep with vibrating arms or legs -- the feelings are worst when I am still, though on bad days I feel buzzing/crawling when I'm up & about. On the other hand, on good days I feel completely normal & on medium days I've had success taking away the worst symptoms with a low Lyrica dose.

It's been about 6 months of such feelings, with some ups & downs but no very obvious trajectory. I might have other symptoms (small muscle twitching/fasciculations, "lump in the throat"/globus sensation, muscle pain, joint pain) but it's hard to be sure.

Tests:
I had a modestly abnormal nerve conduction study about 5 months ago & plan to repeat it soon. Otherwise, basically everything else looks normal (blood sugar, thyroid, CBC, ESR/CRP, ANA, COVID antibody [weeks after my respiratory conditions], Celiac...).

Questions:
(a) Are there any conditions I should look into beyond "post viral neuropathy"?
(b) Is it even realistic to ever expect a more specific diagnosis? It seems a number of people here don't get something specific
(c) Should I worry about symptoms getting (slowly) worse? & how might I tell given the daily ups & downs?
(d) How can I tell if certain secondary symptoms (e.g. muscle twitches) are caused by my main condition (e.g. nerve damage) or are unrelated (e.g. stress/sleep issues)?
(e) I guess finally, how do I get physicians to take the problem seriously? I think from their perspective, a fairly young person walks in & says he has strange sensations, but has no difficulty walking, no numbness, no real "pain," & basically no abnormal tests except one (now old) somewhat abnormal NCS, so overall doesn't seem critical.

Thanks for listening & sorry for the long post. I'm not looking mostly for specific answers, but any sort of words of wisdom on how to handle & think about a condition like this. Appreciate your thoughts 🙂

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