COVID vaccines and neuropathy

Hi @freemanstrees, this must be very concerning for you. You'll notice that I moved your message to this existing discussion about
- COVID vaccines and neuropathy: https://connect.mayoclinic.org/discussion/covid-vaccines-and-neuropathy/

I did this so you can see previous posts and more easily connect with others who have experienced neuropathy either as a possible side effect of the vaccine or of an infection from Covid.

For some people, neuropathy from the vaccine has receded with time. I hope this proves to be true for you too. Do you have neuropathic pain or numbness or both?

Has anyone ever had a neurologist or other doctor that was actually able to diagnosis what this post covid vaccination neuropathy actually is? I've seen my GP, a neurologist, a physiatrist and an orthopedic doctor who all ordered multiple tests, MRIs, xrays. Everything has come back normal so far ,so they just shrug their shoulders, say "who knows" and "It'll go away" and that's the end of it. Meanwhile it's been 6 months and today my skin feels like it is crawling from my toes to calves to thighs with very heavy legs walking. Would love just an actual diagnosis, let alone a treatment plan.

If you are able I would suggest a visit with a neurologist and have them order an EMG. This might pinpoint or rule out something. The doctors I have seen so far have been less than helpful. One suggested that it might be a small fiber neuropathy. That would be diagnosed by a skin biopsy, but you would have to be at a place where they knew what they were doing, like a university hospital or Mayo if you are in the US. And even if it were to be diagnosed, there is very little it seems that they could do for it besides prescribe Gabapentin. Also, from what I have read small fiber neuropathy is idiopathic more than 40% of the time, meaning they don't know what has caused it. But I think a good neurologist could be your next step.

I’m in the same boat, except it’s been over a year. I’ve been to GP, podiatrist, neurologists and had the EMG and tests. All normal. They all tell me the same thing, “ it doesn’t matter what caused it, neuropathy is neuropathy and we treat the neuropathy and not the cause” . So I’ve accepted this answer. Each prescribed a different dose of Gabapentin. I don’t take it because it makes me feel impaired. I take my vitamin B12, alpha lipoic acid and turmeric. Use my CBD cream at night. I do believe I was getting somewhat better, and then caught the Covid for a second time over July 4 weekend. Now the neuropathy is worse than ever, back with a vengeance. Yesterday I had a consultation with a chiropractor who does treatment for neuropathy with an “extra corporal shock wave therapy” machine. He did a better job of testing the different sensation levels of my feet and legs than any of the MDs I have seen. I tried the therapy for a quick bit to see if I could tolerate it, which I did fine. But then….the treatment plan and cost. Oh my!! Twice a week for 10 weeks, which I can do, but almost $4000, which I cannot. No insurance pays for this and no guarantee it will regenerate nerves. I just can’t . I guess I will keep on with what I’m doing and hope for the best.
I’d love to know if anyone has tried the shockwave therapy with any good results.

It sounds like we have travelled the same path. I am on those supplements too. Also, cannot take Gabapentin. I also saw an acupuncturist who was a "neuropathy specialist" and wanted to do the shock wave treatment too, sounds like the same thing. But after the first sample treatment, I would have had to buy the package which was 10 to 20 treatments at a cost of thousands of dollars and no guarantees, so that was a no go for me. I guess it is something to have all the "bad stuff" ruled out. I do have a video appointment with a university hospital neurologist in a few months, but honestly all I can see are more tests and any specialized tests would be a long overnight trip to the university hospital. As my favorite (and smartest) doctor says, "New virus, new vaccines. We just don't know". My conundrum now is whether to take another vaccination when it comes out as I am older and had alot of chemotherapy in the past which didn't leave my immune system in good shape. Also my husband is very high risk. As an RN, I know that any vaccine (not just covid) can trigger some strange reactions, but this has never happened to me before and I have had just about every vaccine there is. I wish you the best and hope and pray that what we are experiencing will just go away!

Are u just wearing mask instead of another vaccine? That is what I have been doing? Have u been offered the avusheld antibodie injections?

I have had chemotherapy also. My body did not have the best reaction to the therapy. My immune system was destroyed to the point I am on Ivig. Before the Ivig I did cold laser therapy, I thought it improved my neuropathy. It did not go away but it is more tolerable. I also was prescribed Metanx. I thought it also contributed to my neuropathy improving. Now my Bs are very high.

I never had neuropathy or paresthesia until I took the Pfizer vaccine 16 months ago. The paresthesia started immediately but it took a month or two until the burning (feet) and numbness started. The symptoms are still with me (including tinnitus) and it flares up every week or so (I can’t seem to pinpoint a trigger). And a Covid infection 4 weeks ago exacerbated the paresthesia, though the intensity is starting to reduce.

Welcome @seachel, Sorry to hear you got a double whammy from the Pfizer vaccine and then a COVID infection. I had the 2 Pfizer vaccines and the 1st booster with only normal side effects and then got COVID which turned out to be mild. I did get the 2nd booster with no effects. I also have idiopathic small fiber PN which didn't seem to get worse so am happy about that. There is another discussion you might find helpful to learn what others shared that helped them:

-- Paresthesia, abnormal sensations: https://connect.mayoclinic.org/discussion/paresthesiaabnormal-sensation/

Did you start on any treatments after you were diagnosed with paresthesia?

Thank you for your comment and recommendation. It has been a battle for those of us who’ve had a reaction to the jab to get any sort of diagnosis or treatment. After over a year, I have only 2 weeks ago found a Dr who is ‘investigating’ the paresthesia/neuropathy with tests. She is Dr no.8. I have just been prescribed gabapentin while she investigates (MRI, which was fairly normal, nerve conductivity to follow, biopsy- last resort, she says). However, I found the side effects more than I can handle, so I’ve back to trying to manage it with non-prescription supplements, etc... Drs have been reluctant to attribute any causality to the vaccine (other than myo/pericarditis) and ‘anxiety’ is usually the ‘diagnosis’, as blood tests tend not to show anything ‘abnormal’, despite other manifestations - such as mine -paresthesia, neuropathy, tinnitus…