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 🙂

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?

Dear @johnbishop, thanks for such a kind & quick reply. I will definitely peruse the sites you mentioned, especially the one on planning doctors' visits as this is something I've been thinking about a lot lately.

My neuropathy symptoms started before receiving a COVID vaccine so I'm confident they're not the root cause. They did flare up again around-ish the time I received my first dose, but my honest inclination is that that was coincidence though I'm not sure. Perhaps a couple weeks after my dose I went from a fairly normal period to a bad one.

However, I've actually received a total of four doses (I was abroad initially & got revaxxed here). For the other 3 I didn't notice anything getting better or worse. & even with the first dose, as I said, you have to stretch the timing a bit to make a connection.

My current thinking after reading this forum is the best name medical science has for this is "post viral neuropathy" as opposed to something more specific, but of course it would be great if my doctor could guide me more.

Hi Curt. It has been 21 months since I first had the viral illness that caused the neuropathy. I have never gotten another diagnosis other than Post Viral Neuropathy. The only abnormal test that I had was the presence of an antibody that they haven’t been able to identify. For a long time I worried that it was something else, but I finally accepted that diagnosis and decided to live with it. I was told that the nerves that are damaged from a viral antibody reaction may slowly regenerate. Or they may never get any better. My symptoms have improved somewhat albeit slowly and non-consistently. I still have some tingling in my feet and muscle cramps with twitching in my calves. My hands bother me the most, especially at night and early morning when they really burn. I exercise and do yoga daily - that helps. I took a low dose Amitriptyline for about a year. That helped quite a bit, but I didn’t like the side effects so I am tapering off of those. I hope your wife finds some answers and starts to improve. Know that it may take awhile but have her keep trying different things to feel better. Listening to other’s stories helps😊
Cindy

Hi Cindy. How did they determine there was a viral antibody present? Do you remember which blood test determined that? Thanks so much. Hope you are doing better.

Hi John,
Thank you for your response. I developed what is believed to have been a mosquito borne illness in April of 2017.
It began with a burning sensation in my feet when they touched the concrete after taking off my shoes one day after coming in from the fields. I was 27 and farming in the Caribbean. It felt like lightening shooting up my legs and I immediately had to sit down and put my socks back on. Within a few hours I had a high fever (104) and rigors and extreme joint pains. This happened every night for several days then went away. I had the exact same episode a month later. This recurred for 6 months and gradually the joint pains and neuropathy in my feet lingered between febrile episodes. I flew back to the states where I was admitted to the hospital and every viral, bacterial and parasitic illness they could think of was ruled out. All they could find was a transiently positive ANA and transient anti fibrillarin antibody and low C3. They referred me to rheumatology who said I didn’t match any AI disorder and tentatively dx me with UCTD. After several months of no fevers during flares I had one more episode exactly like the others with high fever, rigors and extreme back and joint pains. This did coincide with me taking hydroxychloroquine for suspected UCTD. I believe if this was malaria this could have been a reaction from the die off. My symptoms quit deteriorating after this incident and improved to a new normal. for the next two years my symptoms continued to peak every month or so with no more return of the fevers. They consist of joint pains, autonomic dysfunction, burning and pain in feet up to knees and hands and ears. I i had peripheral wasting as well. I saw ID at Johns Hopkins who said this seemed like AID triggered by either malaria or unknown mosquito borne virus. Neurology at Hopkins did electrical testing and dismissed me when this was negative. I was finally seen at Mayo where I was dx with ‘possibly immune mediated’ length dependent small fiber peripheral polyneuropathy.
My symptoms went into remission during pregnancy and now I am 5 months post partum and the symptoms have been gradually returning.
Since the immune system is suppressed in pregnancy I strongly believe now that this is immune mediated.
My flares are made much worse by echinacea, elderberry and other immune stimulants or when I am ill and my immune system is activated.

I would love to meet others who have suspected Apparently Auto Immune SFPPN, especially post infectious.
Thanks again John and I’m sorry this post is so long!

Tracy

Hello @gelda, Welcome to Connect. While we wait for @cindy62 to reply to your questions, here's a little more information that may provide an explanation.

"Can viral infection cause neuropathy? - Infections can attack nerve tissues and cause neuropathy. Viruses such as varicella-zoster virus (which causes chicken pox and shingles), West Nile virus, cytomegalovirus, and herpes simplex target sensory fibers, causing attacks of sharp, lightning-like pain." --- Peripheral Neuropathy Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

Have you been diagnosed with neuropathy?

Hi John. Thank you for your quick response. I have an unclear diagnosis. The only test that can confirm SFN is the skin punch biopsy and these tests are not done in my country. My Bloodwork has not clearly indicated a root cause. I’m stuck with no diagnosis or path forward because what has been tested for so far (and I’ve had many many blood tests over several years) has not been remarkable and there is no “proof” of neuropathy besides all the pain in discomfort I feel that can’t be observed from the outside. Wondering if there is a more specific set of tests for antibodies that would indicate post viral neuropathy beyond ANA. My symptoms started after unusually “powerful” virus. Thanks

Hi John. Thank you for your quick response. I have an unclear diagnosis. The only test that can confirm SFN is the skin punch biopsy and these tests are not done in my country. My Bloodwork has not clearly indicated a root cause. I’m stuck with no diagnosis or path forward because what has been tested for so far (and I’ve had many many blood tests over several years) has not been remarkable and there is no “proof” of neuropathy besides all the pain in discomfort I feel that can’t be observed from the outside. Wondering if there is a more specific set of tests for antibodies that would indicate post viral neuropathy beyond ANA. My symptoms started after unusually “powerful” virus. Thanks