COVID vaccines and neuropathy

Wondering if MAYO has seen any other cases like mine????

@placitan- Welcome to Mayo Clinic Connect. This must have been a dismal surprise. Did you have any history of autoimmunities? Had you had any gastrointestinal or respiratory infections prior to the GBS?

There is no known cause for GBS at this time.
https://consumer.healthday.com/b-4-7-no-proof-covid-vaccines-can-trigger-guillain-barre-syndrome-2651377473.html

How are you being treated for your symptoms now?

@placitan, I had (still have after 6 months) symptoms which resembled GBS after my Pfizer vaccine. But like you, the symptoms aren’t an exact match. I had tingling and burning in both feet & at times my hands & other some areas, right leg weakness, and slight weakness in my arms. Most of my symptoms are better, but as I said, still present. I am interested in what you experienced that led them to treat you for GBS even though they apparently didn’t feel that was exactly what you had. My neuro offered steroids which I declined at the time since I don’t believe in medicating without understanding what’s actually happening. Like you I have also searched for similar reactions and haven’t found much. This forum was the first place I really started seeing connections between the vaccine and neuropathy. Most of what I’ve found here is existing neuropathy becoming worse, or flaring up, but have also found a few others with new onset similar to mine.

Mayo Connect is a support group for people with a variety of health conditions, sponsored by Mayo Clinics & Hospitals. To learn what is being seen/studied by the staff physicians and researchers, try searching for your specific issue and add the word(s) Mayo or CDC, NIH, Johns Hopkins, etc.
Sue

I did find one report from the NIH of confirmed GBS after the Pfizer vaccine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7978140/
I believe it is still considered an extremely rare reaction - lower in incidence than after some of the flu vaccines. IVIG and/or steroids are the standard treatments. I used steroids to call the inflammatory reaction to both flu & Pfizer vaccines. These are short-term boosts for helping the body fight, not long-term prescriptions.
Sue

I have idiopathic small fiber neuropathy. I have had both doses of the Pfizer vaccine. I think my neuropathy has gotten worse since having the vaccine. To me, Covid is potentially far worse than the neuropathy, so I don't regret getting the vaccine.

thanks sue

Hello @jimbeams21524 and welcome to Mayo Clinic Connect. Thank you for joining the discussion and sharing that you had no issues.

What vaccine did you have?

Hello @placitan and welcome to Mayo Clinic Connect. You mention that you have been having neurological issues. Are you willing to share a bit more about what those issues were ten days after and if they've changed at all since?

Specifically I have many classic symptoms of GBS / CIDP I was first diagnosed with GBS 4+ weeks ago and underwent a 5 day regimen of IVIG but after 4 weeks my symptoms have only worsened. Subsequent diagnosis (though not definitive), as of yesterday, is CIDP. Onset of symptoms was 10 days after COVID vaccination (J&J). I am 8 weeks out from initial onset and actively looking for treatment outside of my area (salt lake city) by a physician or group that has a deeper understanding of these neurological disorders and can perhaps give me a definitive diagnosis and treatment.

Happy to share symptoms etc if you are interested

Thanks