COVID vaccines and neuropathy

Hello @amy11, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. It is wonderful to hear encouraging news from members whose side effects have gone away after a period of time. But you are right, it's also not so good that many people have had adverse neuropathy side effects that have still not gone away after a long period of time.

I'm hoping the more data that is captured will bring more knowledge and a possible solution to help those folks. How about you, have you had the COVID vaccine and similar side effects?

I took a flu vaccine at the beginning of this year and developed neuropathy type symptoms from it that have not gone away. I have never had neuropathy before. I do have rheumatoid arthritis that has pretty much been in remission for years. I've been advised to wait until this flare gets better before I take the covid vaccine. My rheumatologist recommended I see a neurologist but I can't get in until June. I have been following the postings here and other sites as well about the vaccine and have to admit I am very scared to take it.

I had similar concerns since I have PMR, small fiber PN, and degenerative arthritis but decided to get the vaccine because of my age at 77. I considered the risks if I didn't get the vaccine which I felt were worse. My PMR is currently in remission and had it been active I may have made a different decision. My doctor also thought I should go ahead and get the vaccine. I'm currently awaiting my second Shingrix vaccine on May 5th.

I describe early spine symptoms That started 1 month after the second dose of Moderna
I have symptoms of peripheral neuropathy for more than 10 years that I manage with exercés . But all the symptoms : paresthésie,loss of balance... became significantly worse and I needed a walker to go out.in addition I had what sound like activation of the orthosymparic system with trembling, elevation of my blood pression, GI symptoms with explosive bowel Movements . After 4 weeks that included Emergency room visit foe blood pression 200 and à hospitalized to feule out all type of diagnosis those symptoms are almost gone but the neuropathy is still more severe than before.
I hate to accuse the vaccine because I am pro vaccine but reading all the poring on this site make me wonder and I think a study need to be done .

Im sorry that Dr Poland is dismissive. There are obviously some types of PN that are exacerbated by MRNA and further damage is being caused to peripheral nerves by immune system responses to the vaccine He says we are not seeing cases yet. But we are reporting them here and to our doctors and to vaers and the Canadian equivalent. I would also wager that there are thousands who have no idea how to report and are sufferering in silence. At what point does Dr Poland 'see cases'. What is his source of evidence? Mayo clinic? Cdc? Obviously not the more anecdotal stories here...

I really wouldn't know if one has anything to do with the other, probably not. I had two MRI in December
.the first 12/14 ,the second12/21, with no problems and my vaccine 2/23. The similarity caught my eye. I still have burning even if it feels a bit milder and muscle pain. the first blood test didn't reveal much, going for more blood test. hope you are feelin better.

I think we need to keep some perspective here, and realize in general only people with a problem come looking for answers on this forum. That means we do not know the experience of all PN patients - only those seeking support or information on Mayo Connect.

Also, it is important to know that those who get Covid, especially a severe case, are very likely to suffer aftereffects for months. Neuropathy is among those symptoms, even in people without prior history. Here is just one recent article, https://www.medpagetoday.com/meetingcoverage/aapm/92270

Here is another, written in March 2021 reporting new onset of neuropathy upon vaccination, resolved after a few weeks: https://onlinelibrary.wiley.com/doi/epdf/10.1002/mus.27251
John (@johnbishop) posted several others yesterday here https://connect.mayoclinic.org/comment/597475/

We each must make our own decisions, but if the incidence of long-lasting neuropathy or inflammatory flares after vaccination were common or widespread, I'm sure we would be seeing it in the news, and would be able to find many reports on the Internet. Look at the uproar caused by a handful of confirmed cases of blood clots after the administration of hundreds of thousands of J&J injections.

Finally, neuropathy after vaccine injections is not a new issue - VAERS has reports dating back to 2007 on neuropathy symptoms after injection. So today I took a dive into the VAERS reports to date on Covid vaccines specifically (86080 adverse reaction reports as of April 16th) Most reports of tingling or numbness (maybe 1% of reports) occurred within minutes of injection, with a few 36-48 hours post-injection (I looked at over 2000 records and found only 5) - I guess someone is going to need to some more digging to try to identify people who don't report - either themselves or through the health care system - to figure out how prevalent & how severe the reactions were.
Sue

Thanks Sue. Very interesting and I agree with all your points. In my case I am wondering if it is because I have post viral PN that the immune system is reacting to what it sees as a new virus by going into overdrive. In which case this kind of reaction may be quite rare and specific to this form of PN. My next door neighbiur is a diabetic with PN and he had no reaction to the nRNA vaccjne for e.g.

Certainly any time one is in a flare of any autoimmune/inflammatory condition, any little thing can kick it into overdrive. You may just have diagnosed your situation perfectly.
In any event, making sure these instances get reported will help the pharmaceutical companies improve their vaccines in the future, or clarify who should receive specific types, based on underlying medical conditions.
Sue

I had pain and tingling in my right arm due to peripheral neuropathy. since I had received the second shot, my arm pain is more intense. pain started to get worst about 3 days after I had my second shot.