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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@steveh017

I've been monitoring the VAERS reported cases of peripheral neuropathy over the past few weeks. Pfizer seems to have the most (137), followed by Moderna (100), with J&J further behind (21), which is roughly in line with the distribution of US doses by manufacturer. Of course, these are all extremely low numbers, and it's understandable why there has not been much attention called to them yet - there also isn't data on how many total people with nerve issues have taken each vaccine (to see what % end up with adverse events).

There seems to be a mix of people here who were fine with the vaccine, and those who had bad neurological reactions - I'm curious if there's any pattern in terms of the root cause of pre-existing nerve issues (VAERS data often doesn't include much on prior history, usually just cites pre-existing neuropathy in general).

I thought I'd create a basic online survey (via Google forms) for anyone here who'd like to anonymously share some info about their vaccine experience - specifically looking for both groups of people (symptoms/no symptoms). Feel free to pass along to anyone with neuropathy who might be interested:
https://forms.gle/2Tggt6EY1WfsgxcB7
Correlation does not imply causation (and this is hardly a scientifically rigorous study), but it would be interesting to visualize the data, as no one else out there seems to be looking at it closely.

Thanks!

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Thank you for doing this! I completed the survey.

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@steveh017

I've been monitoring the VAERS reported cases of peripheral neuropathy over the past few weeks. Pfizer seems to have the most (137), followed by Moderna (100), with J&J further behind (21), which is roughly in line with the distribution of US doses by manufacturer. Of course, these are all extremely low numbers, and it's understandable why there has not been much attention called to them yet - there also isn't data on how many total people with nerve issues have taken each vaccine (to see what % end up with adverse events).

There seems to be a mix of people here who were fine with the vaccine, and those who had bad neurological reactions - I'm curious if there's any pattern in terms of the root cause of pre-existing nerve issues (VAERS data often doesn't include much on prior history, usually just cites pre-existing neuropathy in general).

I thought I'd create a basic online survey (via Google forms) for anyone here who'd like to anonymously share some info about their vaccine experience - specifically looking for both groups of people (symptoms/no symptoms). Feel free to pass along to anyone with neuropathy who might be interested:
https://forms.gle/2Tggt6EY1WfsgxcB7
Correlation does not imply causation (and this is hardly a scientifically rigorous study), but it would be interesting to visualize the data, as no one else out there seems to be looking at it closely.

Thanks!

Jump to this post

I filled out the survey. I'm also curious about this. I've noticed a number of folks who've said they didn't have neuropathy before the vaccine state that they did have an autoimmune disorder prior to the vaccine. This is certainly true in my case. Might be another question to add?

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@lia

I filled out the survey. I'm also curious about this. I've noticed a number of folks who've said they didn't have neuropathy before the vaccine state that they did have an autoimmune disorder prior to the vaccine. This is certainly true in my case. Might be another question to add?

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Thank you both - also appreciate the suggestions to improve the survey (I did add a separate question about any previous history of those conditions for those who responded "No" to having pre-existing neuropathy). For those interested, you can view the data charts at https://docs.google.com/forms/d/e/1FAIpQLSdQBLe9OnK58hEihS_Yf7jXpnK5MX-rVgUXeT5CTCIUYRouUg/viewanalytics

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@steveh017

I've been monitoring the VAERS reported cases of peripheral neuropathy over the past few weeks. Pfizer seems to have the most (137), followed by Moderna (100), with J&J further behind (21), which is roughly in line with the distribution of US doses by manufacturer. Of course, these are all extremely low numbers, and it's understandable why there has not been much attention called to them yet - there also isn't data on how many total people with nerve issues have taken each vaccine (to see what % end up with adverse events).

There seems to be a mix of people here who were fine with the vaccine, and those who had bad neurological reactions - I'm curious if there's any pattern in terms of the root cause of pre-existing nerve issues (VAERS data often doesn't include much on prior history, usually just cites pre-existing neuropathy in general).

I thought I'd create a basic online survey (via Google forms) for anyone here who'd like to anonymously share some info about their vaccine experience - specifically looking for both groups of people (symptoms/no symptoms). Feel free to pass along to anyone with neuropathy who might be interested:
https://forms.gle/2Tggt6EY1WfsgxcB7
Correlation does not imply causation (and this is hardly a scientifically rigorous study), but it would be interesting to visualize the data, as no one else out there seems to be looking at it closely.

Thanks!

Jump to this post

I can’t complete the questionnaire bc it won’t let me past the question about prior health issues. I don’t have any but there is not an option for none and it won’t allow to move on without picking something

REPLY
@steveh017

I've been monitoring the VAERS reported cases of peripheral neuropathy over the past few weeks. Pfizer seems to have the most (137), followed by Moderna (100), with J&J further behind (21), which is roughly in line with the distribution of US doses by manufacturer. Of course, these are all extremely low numbers, and it's understandable why there has not been much attention called to them yet - there also isn't data on how many total people with nerve issues have taken each vaccine (to see what % end up with adverse events).

There seems to be a mix of people here who were fine with the vaccine, and those who had bad neurological reactions - I'm curious if there's any pattern in terms of the root cause of pre-existing nerve issues (VAERS data often doesn't include much on prior history, usually just cites pre-existing neuropathy in general).

I thought I'd create a basic online survey (via Google forms) for anyone here who'd like to anonymously share some info about their vaccine experience - specifically looking for both groups of people (symptoms/no symptoms). Feel free to pass along to anyone with neuropathy who might be interested:
https://forms.gle/2Tggt6EY1WfsgxcB7
Correlation does not imply causation (and this is hardly a scientifically rigorous study), but it would be interesting to visualize the data, as no one else out there seems to be looking at it closely.

Thanks!

Jump to this post

I’ve seen so many people on another group who first developed neuropathy from the Shingrix vaccine and then again from covid vaccine. I did as well but it was much milder then the effects from Pfizer. Mine had cleared up, I had zero symptoms before my 1st dose Pfizer. It would be very Interesting to know how many others had the same experience and if that was a factor in how bad of a reaction you get from Pfizer. Thanks for doing the survey.

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@tracyt

I can’t complete the questionnaire bc it won’t let me past the question about prior health issues. I don’t have any but there is not an option for none and it won’t allow to move on without picking something

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Thanks for the heads up - I added a "N/A" option for that question. I was unaware of the prevalence of neuropathy linked to the shingles vaccine, so I've also added that as an option for pre-existing neuropathy cause.

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@dhamil

I’ve seen so many people on another group who first developed neuropathy from the Shingrix vaccine and then again from covid vaccine. I did as well but it was much milder then the effects from Pfizer. Mine had cleared up, I had zero symptoms before my 1st dose Pfizer. It would be very Interesting to know how many others had the same experience and if that was a factor in how bad of a reaction you get from Pfizer. Thanks for doing the survey.

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Since you asked, I'm one of the folks who did not have any symptoms of neuropathy prior to the Pfizer vaccine (began within 5 min of injection). I have never taken a shingles vaccine, nor any other adult vaccine, save for tetanus.

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@sueinmn

I had severe inflammation after my flu vaccine (before the Covid vaccine) and finally had to resort to steroids to calm the flare. I have flared after both Covid vaccines, but managed without another course.
Sue

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After your 2nd shot Did your flares completely resolve and how long did it take?

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@lia

Since you asked, I'm one of the folks who did not have any symptoms of neuropathy prior to the Pfizer vaccine (began within 5 min of injection). I have never taken a shingles vaccine, nor any other adult vaccine, save for tetanus.

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Did your neuropathy completely resolve?

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@dhamil

Did your neuropathy completely resolve?

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My symptoms have not resolved at all. I am only 20 days in.

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