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@corydeburd

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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Replies to "Hi folks, It's been great to stumble onto this community -- I've learned a lot from..."

Hello @corydeburd, Welcome to Connect. As I read through your post I can see that your thoughts are extremely organized, thorough and you have done a lot of thinking on what is going on in your body. One of the key questions that you listed is what a lot of members have said or at least thought about at one time or another when seeking help for a condition. That question is how do I get physicians to take the problem seriously. One approach is to plan your discussion with your doctor well in advance of your appointment. There is a great website with some tools to help you with that - https://patientrevolution.org/visit-tools. I think most doctors want to help and the more you know about what is going on with your body, the better questions you can ask the doctor and hopefully they can comp up with a diagnosis and treatment plan.

The other thought I have is that there is so much information on the Internet that may or may not be reliable so you really have to do your homework to find reliable sources. There is a discussion on Connect that you might find helpful on how to find reliable health information - How do you identify trustworthy health information?: https://connect.mayoclinic.org/discussion/how-do-you-identify-trustworthy-health-information/

My favorite for finding the latest medical research information is Google Scholar - https://scholar.google.com/

Are your symptoms related to taking the COVID-19 vaccine or having COVID?

hello, this sounds very similar to my condition. I am now going on7 years of sleep deprivation due to muscle tension , pain and vibration at nighttime. I have gone through multiple medications and am now trying to adjust to lyrica. I am starting at 25 mg Three times a day, with the goal to take 50mg three times a day. I am now speeding through the morning and afternoon with out of body feelings, and sleepless at night. I do not need help during the day. Only at night.
I notice you use Lyrica only on bad days. I did not know this was an option. Would you tell me the dosage you take for nighttime pain, and what time is most effective.
Thank you for any advice you can provide.