COVID vaccines and neuropathy

Posted by cue @cue, Feb 15, 2021

I am 85 with small fiber neuropathy that is getting worse. My neurologist thought it would be a good idea for me to wait with the covid vaccine and not be first in line to see how it affected other people with neuropathy. Probably because it is a new technology. Has anyone had a problem with neuropathy after receiving the vaccine? If so, which vaccine?

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@neenee2k

Oct. 22 2021 I had an EMG done. I have light neuropathy in my feet then. Jan. 22 2022 I had my 3rd. Moderna shot. I was deathly ill at home for 5 days in and out with fever. Lost 8 pounds. Then I got a pancreatitis attack and had to go to the ER and I never had a problem with it and I'm not diabetic. Then shortly after my left thumb went numb. Next thing you know both my hands are small fiber neuropathy and now feet are worse then ever. I am now receiving 2 days a month an infusion. I am not happy with where the SFN came from. Before the 3rd. shot I had no problem with the first two vaccines. This is my experience as of today. I wish you the best. I'm 68 now. Denise

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What type of infusions are you receiving ?

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In reply to @neenee2k "IVIG" + (show)
@neenee2k

Thank you for your reply. If you are on Medicare, did Medicare approve the IVIG? My doctor has not even suggested this treatment .

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Hello,

I have SFN. I did okay with the first two Pfizer shots. I got the booster- did not affect neuropathy but had other issues like swollen lymph nodes, etc that did resolve a couple weeks after. I got COVID last May. I had a lot of edema throughout my body which worsened the neuropathy. It was reducing months later but not gone. I now have long covid. I got another booster two months ago and did notice increased numbness (I think from swelling), and I had flue like symptoms, lymph node swelling , etc.. I think the neuropathy went back to its “normal” level of numbness and nerve pain. Just in case this info helps anyone. I am 37, and was diagnosed 9 years ago when the nerve pain got debilitating

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@selene53

Thank you for your reply. If you are on Medicare, did Medicare approve the IVIG? My doctor has not even suggested this treatment .

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I am on Medicare and secondary insurance. Medicare pays on my Medicare B and the other picks up the rest. It is very expensive medicine. I get it 2 days together a month. The infusion takes 4-5 hours each day. I usually sleep through it. I'm a beginner on this med.

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Not after the vaccine, but mine came back (after being alleviated with infrared the year before) with a vengeance after I had Covid. Still bad and now it’s in my hands.

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For anyone who has been diagnosed with Covid or Covid-vaccine autoimmune-driven neuropathy, can you share how the diagnosis was made? My MD is looking for specific antibodies for non-Covid autoimmune confirmation, but I assume that anyone who had Covid or the vax will have the expected antibodies, so there must be something else they look at. Thank you.

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I developed sensory and motor polyneuropathy after the Pfizer vaccine x 2. My neurological symptoms began within 2 weeks of the first vaccine but peaked 7 months later. That delay is consistent with autoimmune-mediated nerve damage. At the same time that my neurological symptoms were peaking, my ANA titer increased 4-fold. I had never had autoimmune issues before. I also repeatedly tested positive for Sjogren's B autoantibody, but not Sjogren's A, which is unusual. Extensive testing ruled out Sjogren's Disease. Since the peak of my vaccine reaction, I have been slowly improving. Based on my prior excellent health, relatively acute timeline for the nerve damage, autoimmune titer, and gradual improvement once I stopped the vaccines, my outstanding neurologist agreed the likely cause of my neuropathy was the vaccine. There may be more specialized autoantibody testing available from research labs, but I haven't resorted to that because my symptoms are improving.

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I had peripheral neuropathy I believe as a result of having COVID in 2019 before anyone here knew of it. A few months later, I got tremors first in the leg/hip where the neuropathy was. Then I got Omicron and then in my hand and neck where I had many issues over the course of the last decade or so, and that also left me with a tremor. I have been diagnosed with Parkinsons in May of this year. I think the tremors are a result of the COVID. So sad to read here how many people have suffered from the shots. I'm glad I didn't get those. The COVID is detrimental enough on it's own. https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd202211

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