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Anyone had a problem with neuropathy after receiving the vaccine?

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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

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athenalee | @athenalee | Mar 25, 2021
In reply to @helennicola "Joy, I totally agree with all of you who are reluctant to get their 2nd shot;..." + (show)
Profile picture for helennicola @helennicola

Joy, I totally agree with all of you who are reluctant to get their 2nd shot; I honestly don’t know what I would decide if I knew then what I know now. On one hand you have to consider husband, family, friends etc. because of uncertainty re: new strains and effectiveness of existing vacs, also desire for more freedom socially and less fear of contracting the virus; on the other hand there is the chance your health will suffer and pain could increase and you may be worse off than before in comparison to a possibly benign response to contracting COVD. Very hard choice but I might lean towards waiting if that is a viable possibility. We’ll still all be wearing masks for a while anyway. I am still not back to pre-vac. symptoms and my 2nd shot was Feb.10, I am better but some changes remain, I’m hoping they too will resolve. Helen

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I’m in the same situation. However, had I been able to discuss my increased neuropathy symptoms after my first shot with my neurologist, I’m pretty sure I would have waited. Since I have an autoimmune disease and he said he wasn’t surprised my symptoms increased, that would have at least informed my decision. Then, with the not so stellar results of the John Hopkins antibody analysis on transplant patients receiving the vaccine, I definitely would have waited. I do hope researchers wake up and start looking into what is happening with those of us facing increased symptoms and if this effect is going to be permanent.

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tigreyes2004 | @tigreyes2004 | Mar 25, 2021

Hi
You are absolutely right. What is good for 1 person, may not be good for the other. I am going to wait but I just wish the CDC would look into more for people with Neuropathy.
I see they are checking out the pregnant ladies to see if it safe. They need to do more study.

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emily75 | @emily75 | Mar 25, 2021
In reply to @joeyd5641 "Hi. I have a history of nueropathy that was dormant the last few years. the pfizer..." + (show)
Profile picture for joeyd5641 @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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emily75 | @emily75 | Mar 25, 2021
In reply to @joeyd5641 "Hi. I have a history of nueropathy that was dormant the last few years. the pfizer..." + (show)
Profile picture for joeyd5641 @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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emily75 | @emily75 | Mar 25, 2021
In reply to @mawagner13 "Thank you Amanda Although it’s been nearly 2 months since my first and only dose, the..." + (show)
Profile picture for mawagner13 @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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John, Volunteer Mentor | @johnbishop | Mar 25, 2021
In reply to @emily75 "Oh no. This scares me. My pine is not dormant. I don’t want to make it..." + (show)
Profile picture for emily75 @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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emily75 | @emily75 | Mar 25, 2021
In reply to @johnbishop "Hello @emily75, Welcome to Connect. I've had neuropathy in my feet and legs for 20+ years..." + (show)
Profile picture for John, Volunteer Mentor @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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emily75 | @emily75 | Mar 25, 2021

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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cosette1968 | @cosette1968 | Mar 25, 2021
In reply to @chezpl69 "Hi. My symptoms built up very slowly. I'm still having burning in the face thighs ,moving..." + (show)
Profile picture for chezpl69 @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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chezpl69 | @chezpl69 | Mar 26, 2021

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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