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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@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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Oh no. This scares me. My pine is not dormant. I don’t want to make it worse.

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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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Oh my! I am so sorry. I am worried now.

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@mawagner13

Thank you Amanda Although it’s been nearly 2 months since my first and only dose, the neuropathy hasn’t lessened or resolved. Meds make it manageable but as those with neuropathy know, “manageable” doesn’t mean your quality of life isn’t impacted. Taking supplements. Hoping time is the tincture and 1 dose efficacy proves long term.

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Can you tell me if you are taking gabapentin?

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@emily75

Oh no. This scares me. My pine is not dormant. I don’t want to make it worse.

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Hello @emily75, Welcome to Connect. I've had neuropathy in my feet and legs for 20+ years and have had both of the Pfizer COVID vaccines with only a sore shoulder for the first one and extreme fatigue the day after my second shot. I think it's OK to be concerned but the more you know about it and that each of us are different it may help with some of the worry.

Have you discussed getting the COVID vaccine with your doctor or neurologist to see what they think based on your diagnosis and symptoms?

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@johnbishop

Hello @emily75, Welcome to Connect. I've had neuropathy in my feet and legs for 20+ years and have had both of the Pfizer COVID vaccines with only a sore shoulder for the first one and extreme fatigue the day after my second shot. I think it's OK to be concerned but the more you know about it and that each of us are different it may help with some of the worry.

Have you discussed getting the COVID vaccine with your doctor or neurologist to see what they think based on your diagnosis and symptoms?

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I don’t remember him mentioning that it could make my neuropathy worse. It seems like most doctors are for getting the vaccine to prevent the serious complications of COVID.

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It seems like I should have been warned about this possibility. Is J and J a better choice? Should I wait to get that one?

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.....may i ask, in the areas or States in which you live, is there an American Organization or such that mainly deals with or has a well known "ace" department or maybe within a teaching hospital, dealing specifically or mainly with neuropathy in all its forms? Would that organization/medical facility recommend one vaccine over the other if asked..... I have only been to a few appointments for my glaucoma to one of the teaching hospitals in Toronto , but they are far ahead of local doctors in their knowledge; and I may even follow my own suggestion and phone their neurological department and ask if they have any recommendations etc., I think I might feel able to make a better decision based on what doctors 'in that field' study... would that be a good idea I wonder, as even here we get conflicting reports depending on who is writing the reports and on who's behalf... I wish I was the type of person that would just go when called and, as many, not even ask which vaccine I am being given/getting. J.

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@chezpl69

Hi. My symptoms built up very slowly. I'm still having burning in the face thighs ,moving slowly down the legs. I also have some needles here and there and very little hitching.. My neurologist thinks I should get the second shot. I'm not convinced. I did take an antibody test ,hoping that would help me make up my mind about the second shot. The results should be in today. Had I known. this was going to happen to me I would have one for the J& J vaccine . Tomorrow is my last chance for the second shot. Scared and confused.

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I took an antibody test too - the spike semi-quantitative one. My understanding is that there is no way yet to interpret the numbers however it does give you a number and also tells you what is considered positive. I was told if I was positive, it probably indicates I have already had Covid ( which I believe is possible) and the first shot would be enough - acting like the second shot in effect. There are studies stating this very thing but there has been no official statement regarding this as of yet. It makes sense to me - if I was already exposed to Covid, my body has already been primed and this first shot was really like a booster. Did your neurologist also say this, since he ordered the test? I hope you receive your results very soon and it will help you decide. Also, why do you say tomorrow is your last chance for the second shot? I understand that you are scared and confused. I still am too.

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I'm not sure what kind of antibody test I took. Maybe it wasn't the right one, It came back negative anyway.I took it at the local urgent care. It wasn't ordered by the neurologist. I took the first shot February 23 so I'm at the end of the time allowed for the second shot. My symptoms haven't improved, actually they got worse,I had a bad night with burning in my legs and now my left arm too. I cancelled the second shot. I hope I did the right thing. thank you for your support.

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@avmcbellar

Hi @chezpl69 I believed antibodies were developed on the first dose but not enough. That is why the 2nd dose was needed for better immunity. I would be interested which source gave you that information. Was it a physician? Thanks.

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You are right. I thought they might be able to detect the antibodies even if the number was small. I asked for the test and was given at the local urgent care. In fact it came back negative.

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