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.

Question : Does anyone have any information on how long it takes to get FGFR3 and TS-HDS blood test results ? These are autoimmune antibody tests that my neurologist ordered. Does only one lab in the United States do these tests? My neurologist advised me to hold off on the Omicron booster until these results are in. Thanks in advance.

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Profile picture for ron55 @ron55

After my second Pfizer my involuntary movements started !!

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I agree. That’s when my neuropathy started and has gotten worse.

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Profile picture for selene53 @selene53

Question : Does anyone have any information on how long it takes to get FGFR3 and TS-HDS blood test results ? These are autoimmune antibody tests that my neurologist ordered. Does only one lab in the United States do these tests? My neurologist advised me to hold off on the Omicron booster until these results are in. Thanks in advance.

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I agreed. I have neuropathy, optic nerve damage and my right arm is numb.

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Profile picture for dhamil @dhamil

Really happy for you. It sounds reassuring that it would be a good fit for you. Unfortunately I do have some heart issues now. That’s what’s held me back so far. My Echo says my heart muscle is healthy except for mild mitral prolapse. But I’ve developed increased heart rates, skipped beats and extra beats and pots after getting vaccinated. My cardiologist said she knows nothing about Evusheld to advise me! I am in the process of looking for an immunologist/allergist to see what they have to say about my situation. Did you make an appt with a general immunologist/allergist or did they have a special interest in vaccines? If it’s any reassurance for you My rheumatologist said He didn’t believe Evusheld would cause the same reaction as Pfizer did in me because it has a different type of antibody. But we also didn’t know about my heart issues at that time. I hope you get approve. Wishing you all the best next week. Please let me know how you make out.😊

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I received the Evusheld injections last week. Thankfully, all went well. I have not had any side effects to this point. I read that the protection begins within about one hour after the shots. When you receive the vaccines, the body needs to produce antibodies but with this, lab produced antibodies are injected and therefore ready to go. I found that very interesting.
I hope that you’re able to find safe protection from Covid with your other health considerations.

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That’s great! I was wondering how you did…thanks for letting me know. By chance did they say if they know if it’s as protective against this most recent variant.

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Profile picture for dhamil @dhamil

That’s great! I was wondering how you did…thanks for letting me know. By chance did they say if they know if it’s as protective against this most recent variant.

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Thank you. They did not discuss whether it’s protective against the new variants. I haven’t read anything that says they have addressed them either. I just felt that taking the injections was the best option for me as opposed to having no current protection at all.

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Yes! I am 57 and bilateral peripheral neuropathy (legs/feet) started after getting two doses of the COVID vaccine (Moderna). I will NOT be getting the booster.

I have progressed from a walker to a cane. I do not trust that I can move quickly enough if I needed to slam on the brakes, so I have not driven in over a year, which totally sucks. I love driving, exploring, road trips, etc.

I miss driving -- a lot. Thankfully, my hubby is retired and can manage any driving needs. He also is now 100% in charge of grocery shopping and cleaning. I am blessed to have him as my spouse and to be able to walk through this journey with such a good man.

I have filed for disability due to the neuropathy and all of the limitations it puts on my life. The pain is unbearable some days, so I have worked with a doctor in my state for a Rx of medical CBD/THC. It helps tremendously. Within a few minutes of taking the gummy, my nerve pain subsides to "tolerable to gone".

Hang in there and thank you for sharing your story.

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I am hoping the FDA will approve Novavax as a booster soon. It has been approved as a booster in the EU and other countries. I have never had a problem with that type of vaccine. Because I have SF neuropathy and what my neurologist said to me, plus this discussion group, I didn't want to risk the mRNA vaccines. I had two J&J vaccines but want more protection. Because of heart issues and other concerns I can't risk Evusheld.

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Profile picture for kathleen123 @kathleen123

I have (small fiber) non-length dependent neuropathy. I had my first Pfizer Covid-19 vaccination 2 1/2 weeks ago. It exacerbated my neuropathy symptoms. I’m scheduled for my 2nd shot on Wednesday but I don’t know whether to get it since the 2nd shot is much more likely than the first to have significant adverse effects. I called Pfizer and they claim that Covid-19 vaccination is not related to any neurological side effects although I have read elsewhere it can exacerbate PN. My internist says there is just no data to know whether the 2nd shot is likely to make my symptoms worse.

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Hi,
Just wanted you to know that along with my neuropathy, I've received 2 original vaccines and 3 boosters. The vaccines and 4 out of 5 shots led to an uncomfortable week, but compared with what we live with, it was no big deal. Getting Covid is far worse.

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Profile picture for cue @cue

I am hoping the FDA will approve Novavax as a booster soon. It has been approved as a booster in the EU and other countries. I have never had a problem with that type of vaccine. Because I have SF neuropathy and what my neurologist said to me, plus this discussion group, I didn't want to risk the mRNA vaccines. I had two J&J vaccines but want more protection. Because of heart issues and other concerns I can't risk Evusheld.

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Please research mRNA vaccines and put your mind at ease. mRNA has been around for 30 years, and protects the vaccine material from being attacked before it gets destroyed by our natural system. These is no part of the Virus involved with this type of vaccine. It travels to our immune system
and teaches our cells how to make a protein that will trigger an immune response inside our bodies. Researchers have been studying and working with mRNA vaccines for decades.

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