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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@lk61

Ms. Young, I understand your point and it is valid, but there is a problem when the standard approach of entrusting one’s own physician with your illness isn’t working. By and large, most of the people on this thread are being ignored or placated by their physicians, or their physician just doesn’t know how to help them. You begin to lose trust in the only system of care you have, and VAERS is part of the same system. Additionally, VAERS is only one source of data. Other evidence needs to be considered as well. What I wish is that the few who do seem to have docs who believe them and really are trying to figure this out would ask those physicians to take this problem forward and increase awareness of it through their professional channels. I have personally asked my own neurologist, who practices at an academic medical center, to gather some of his colleagues to research these vaccine reactions. Unfortunately, he does not fall into the group who is motivated to help.

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I am partial to Neuropathy getting the most attention for any type of research for understanding what this ailment is about since a lot of us in the forum already fell into the idiopathic no-clue category of PN before Covid came along, and it’s been a major life changer. My doctor wouldn’t even explore my theories on what might have caused my PN, as there isn’t much of a collection system to see or resources to research.
So I agree with @colleenyoung that we are so fortunate to at least have the VAERS to at organize snd centralize the affects being reported by people; it’s only as good as people report, but is a tool that researchers dedicated to the system can methodically sort through and analyze, to hone in on the most common themes and prioritize further research and testing accordingly. I do not participate in other Mayo forums of different ailments, or any other medical websites, but I have different friends who believe the vaccine has left them with migraines headaches, heart palpitations, blurred vision, or tinnitus . Unless a system like VAERS is used to get the reported effects by patients, they’re unable to determine what symptoms are most common with enough data to help them focus on getting help and improvements to the most people.
Like I said, I’m biased toward finding relief for Neuropathy caused by the vaccine or anything else, so am hoping everyone is using the VAERS to help them determine Neuropathy effects are priority for further vaccine research. I know double counting skews data, but pray doctors are encouraging patients to use the system or providing them help to get it done on their behalf.

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@detc

I was diagnosed with neuropathy after my first Moderna booster shot. My neurologist had seen several other patients presenting similar side effects from the vaccine. I had an extremely robust reaction to the first shot. A week after the shot I had a rash that covered almost the whole front of my upper arm. My neurologist has advised against another booster, not wanting to tempt fate, as my neuropathy is greatly improved at this point. Is there any safe optional vaccine or another alternative for me to take to try to stay protected from Covid?

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Have u taken Evusheld injection as an alternative? I had reaction similar to yours from Covid vaccine but haven’t noticed any people with neurological reactions to COVID vaccine that have taken Evusheld.

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@beegie

Have u taken Evusheld injection as an alternative? I had reaction similar to yours from Covid vaccine but haven’t noticed any people with neurological reactions to COVID vaccine that have taken Evusheld.

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I have not taken Evusheld but just discussed the possibility with my neurologist. At her suggestion, I have an appointment with an allergist/immunologist in November to discuss what happened and what options may be safe for me. I’m sure the subject of Evusheld will be discussed. My neurologist said that her other similar patients have all stayed away from any further vaccines. The most concerning thing she told me was that there is a possibility of an even worse case of neuropathy possible from either another vaccine or a case of Covid. I would be interested, as you inquired, if anyone has successfully received Evusheld as an option and whether they had any negative consequences. From what I’ve read, if you had an allergic reaction to the mRNA vaccines, you would likely have the same with Evusheld. I don’t know if that would pertain to developing neuropathy. It also has some stated cardiac risks, but generally for patients who have existing cardiac issues. It seems that nothing is totally risk free.

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What is Evusheld injection? Never heard about it.

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@lk61

Ms. Young, I understand your point and it is valid, but there is a problem when the standard approach of entrusting one’s own physician with your illness isn’t working. By and large, most of the people on this thread are being ignored or placated by their physicians, or their physician just doesn’t know how to help them. You begin to lose trust in the only system of care you have, and VAERS is part of the same system. Additionally, VAERS is only one source of data. Other evidence needs to be considered as well. What I wish is that the few who do seem to have docs who believe them and really are trying to figure this out would ask those physicians to take this problem forward and increase awareness of it through their professional channels. I have personally asked my own neurologist, who practices at an academic medical center, to gather some of his colleagues to research these vaccine reactions. Unfortunately, he does not fall into the group who is motivated to help.

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Seems that doctors who "raise their hand" to say something are silenced, just like people on Facebook who say ANYTHING about their PERSONAL EXPERIENCE with C-19 vax are locked out. I've been locked out of my FB account TWICE just for even suggesting this might be the cause of my neuropathy, brain fog, and mobility issues.

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I had Evusheld injections. No side effects. I have RA, and on Rituxan Infusions for treatment . I had all COVID Vaccines. 2 initial, then 2 Boosters. The I was informed that because of the Rituxan, I did not have any antibodies ( had to have bloodwork to determine) Rheumatologist recommended Evusheld. As a side note.. within 8 days after my second booster, I got Shingles.. I now have Post Herpetic Neuralgia. Severe Chronic nerve pain .

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@txsongbird

Seems that doctors who "raise their hand" to say something are silenced, just like people on Facebook who say ANYTHING about their PERSONAL EXPERIENCE with C-19 vax are locked out. I've been locked out of my FB account TWICE just for even suggesting this might be the cause of my neuropathy, brain fog, and mobility issues.

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Your experience is so sadly true for so many people. Are you aware of a website called Children's Health Defense? Although they vehemently advocate for children and their medical rights, they are a great source of information about what is going on with VAERS, how the CDC has played with the numbers of actual Covid deaths, and doctors who speak out against the vaccine. They always have interesting articles on people who have been physically, and all too often irreparably damaged by the vaccine. It's very interesting reading. The founder of Children's Health Defense has spoken his mind, and therefore has been banned from Twitter, FB, and just about every social media outlet in existence. He's even had family members cut ties with him because he has spoken out on the subject. Needless to say, I have a lot of admiration for him.

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Is there any risk in having too many Covid antibodies? Had a Moderna booster at the end of October, 2021. Within 2 months, I developed neuropathy, and was diagnosed with vaccine induced neuropathy. Now scheduled for Evusheld in early September. Just read about severe Covid cases after an overproduction of autoantibodies after infection. Are autoantibodies completely different from vaccine produced antibodies and monoclonal antibodies? I would really appreciate professional advice on this matter.
Thank you.

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@detc

Is there any risk in having too many Covid antibodies? Had a Moderna booster at the end of October, 2021. Within 2 months, I developed neuropathy, and was diagnosed with vaccine induced neuropathy. Now scheduled for Evusheld in early September. Just read about severe Covid cases after an overproduction of autoantibodies after infection. Are autoantibodies completely different from vaccine produced antibodies and monoclonal antibodies? I would really appreciate professional advice on this matter.
Thank you.

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Detc, this is a good question for your doctor if you are looking for professional advice.

Here’s a good article that helps explain:
- Antibodies From Vaccines vs. Antibodies From Natural Infection https://www.verywellhealth.com/antibodies-from-vaccines-and-from-natural-infection-5092564

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Definitely after my first shot of Pfizer: almost immediately both calves started tingling but that calmed down after 20 minutes. I had SFN for many years prior. But since the vax I do feel worse.

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