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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@mawagner13

Hello. I’m sorry to hear this. Yes, several in the group have had the same reaction. My neuropathy was also dormant but emerged with a vengeance all over my body hours after the first dose of moderna. That was Jan 5 and it hasn’t resolved but it’s not as constant as it was. I didn’t get the 2nd dose. I encourage you to report your reaction in the vaers system. Physicians are reluctant to consider a causal relationship because it’s not a reported or expected side effect. Best of luck.

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Hi .I had facial neuropathy five years ago as a result of chemotherapy. It took months and months to resolve itself to 99%, I received the first shot of the pfizer vaccine feb 23. the neuropathy came back slowly on my face, it was really evident three weeks from the vaccine, I also have burning in my thighs and some needles everywhere else. i have postponed the second shot twice,i have an appointment for friday but I'm still not sure if to keep it. There won't be much time left after this appointment if I don't keep it.Very worried that the second shot will make it much worse.
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Hello @chezpl69 and welcome to Mayo Clinic Connect. I am sorry to hear about your return of symptoms following your first shot. I am sure this decision to follow up with the second shot is challenging for all the obvious reasons.

Have you reported your symptoms following your vaccine? Have you connected with your Neurologist for recommendations?

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@athenalee

I posted on this thread a couple weeks ago about increased neuropathy symptoms after receiving both Covid vaccine shots. My symptoms have improved somewhat, but haven’t returned to the level pre-vaccine. I had my first visit to a neurologist today. When I asked him about it, he said he wasn’t surprised at all since so many neuropathies are related to autoimmune diseases and that the vaccine is designed to boost our immune response to fight Covid. Makes perfect since now that I think about it. Too bad no one warned us...

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Hi. Did your neuropathy increase with the first or the second shot? Mine came back after five years with the first shot and didn't go away yet. I am do for the second shot friday( I have already postponed twice) Not sure what I'll do.

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Hi chezpl69, I'm sorry you are having the same experience as we are. Yes, neuropathy came on after the first Moderna shot. The same night actually. One of my first symptoms was left foot numbness then both feet and pinpricks all over with some bouts of weakness. I am 15 days out and it did get better then worse again. Was seen by primary care then neurology. Neurology has decided to monitor at this point hoping that this will go away. He did not recommend the second shot for me at this point. He did say we will see the extent of what is going on in about six weeks. Hoping for the best.

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@ronmartin76. I hope the best for you too. Please keep us posted

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Yes to the first question and having a virtual appointment tomorrow with my neurologist. I wasn't able to get an in office appointment right now.

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@ronmartin76

Hi chezpl69, I'm sorry you are having the same experience as we are. Yes, neuropathy came on after the first Moderna shot. The same night actually. One of my first symptoms was left foot numbness then both feet and pinpricks all over with some bouts of weakness. I am 15 days out and it did get better then worse again. Was seen by primary care then neurology. Neurology has decided to monitor at this point hoping that this will go away. He did not recommend the second shot for me at this point. He did say we will see the extent of what is going on in about six weeks. Hoping for the best.

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Good luck to you. . I Most likely will not get the second shot but I'll see what the neurologist recommends tomorrow.

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@chezpl69

Hi. Did your neuropathy increase with the first or the second shot? Mine came back after five years with the first shot and didn't go away yet. I am do for the second shot friday( I have already postponed twice) Not sure what I'll do.

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My neuropathy increased more after the first dose (on 2/10, Pfizer) but still a pretty good increase after the second (3/4). Symptoms have leveled off, but are significantly higher than pre-vaccine. My neuropathy is fairly recent, following a liver transplant in August. The neurologist doesn’t know what initially started the neuropathy, although it might be related to Primary Biliary Cholangitis, an autoimmune disease, which led to my liver cirrhosis. I’d suggest speaking with your neurologist prior to getting the next dose. I don’t know how many people in this discussion have neuropathy due to an autoimmune disease, but after what my neurologist said, I might have reconsidered getting the vaccine. Although, I so want this pandemic to end and to escape lockdown!

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@joeyd5641

Hi. I have a history of nueropathy that was dormant the last few years. the pfizer vaccine brought it back the next day. it went away after a week from the first shot, but like an idiot i went for the 2nd shot and it came back even worse,11 days out and its constant burning and itching.

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Hi have your symptoms improved? I got symptoms three weeks after the first pfizer shot. I have burning in thighs and face. some needles in my arms hands and legs It seems like every day I get a little more. I have already postponed the second shot twice. My neurologist suggested today that I go for the second shot. I'm not convinced.

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Best of luck to you. Please let us know how you are doing?
I know I am scared to get it. What kind of vaccine did you get?

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