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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@saski

are you able to share that post here or the title? Good research is always valuable!
Sorry about the V/I btw.

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@saski - This may be the Harvard study referred to but I'm not sure...

COVID Long-Haulers: Neurological System
-- https://scholar.harvard.edu/cvt/covid-long-haulers-neurological-system

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@shona

Yes I’m in that same group. My foot and leg neuropathy has worsened since second Pfizer as well. Good that people are finally talking about it

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Same with me after booster got much worse

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@silvern12

Same with me after booster got much worse

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Yeah I didn’t get the booster for that reason. No more shots for me

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@shona

Yeah I didn’t get the booster for that reason. No more shots for me

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I had an awful reaction to the 2 Pfizer shots I got. A little worse after the first one. The second one left me with horrible pain for four months. My two booster shots were J&J and I was fine with that one.

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I have recently been diagnosed with small fiber neuropathy. It started with tingling in both my hands at feet at the same time. This has continued for 10 months. My symptoms didn’t start until 6 months after I had my second vaccine. I was wondering if anyone started to get symptoms months after the vaccine or did it start right away? I just don’t know if the vaccine could have caused this so many months later.

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@joypalmer1

I have recently been diagnosed with small fiber neuropathy. It started with tingling in both my hands at feet at the same time. This has continued for 10 months. My symptoms didn’t start until 6 months after I had my second vaccine. I was wondering if anyone started to get symptoms months after the vaccine or did it start right away? I just don’t know if the vaccine could have caused this so many months later.

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@joypalmer1 I have been diagnosed with small fiber neuropathy (idiopathic). I retired from work in March of last year and woke up two days later with full onset pinpricks all over including my eyes. Mine is non-length dependent because it started all over my body. I had no idea till I saw a neurologist. I had the two vaccines in January with the last one on Jan. 29th. It was the around March 10th that they pinpricks started. I had a lot of testing done and the only thing that was positive was the skin biopsy for SNF. I did not consider the shots at all till recently. I asked the question of many people when after the shots did you experience issues. Some right after the shot and some not till weeks later. I wonder the same thing about the shots but I went in to see the ARNP for gastroenterology and she told me that since Covid started that a lot of people have ended up with gastro problems she thinks are related to the shots. I asked the neurologist on my first visit how many patients that he had woke up with full onset like I had. He said NONE. It is rare. I have since had the boosters and will continue to take them if they are offered. I believe in taking the shots. You can google things regarding the covid shots and symptoms. There is a group on Facebook that talks about it. I have done a lot of reading about it. I am a retired nurse and I have a firm belief that knowledge is good if you have something. I have a friend that said they take a certain medicine but don't know what it is for. I have another one that doesn't want to know certain things from her Doctor. I have seen that a lot over the years in patients. I want to know everything I can about this issue that I can find out. The neurologist checked me for a lot of the usual autoimmune diseases, genetic testing, heavy metals, vitamin B level. I had a brain scan. I have had other tests too. When they tell you it is idiopathic meaning no known cause that is difficult. People want to know. I write down questions that pop in my head and also after reading things about SNF. Good luck to you in your quest to find out information.

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@rnlorena

@joypalmer1 I have been diagnosed with small fiber neuropathy (idiopathic). I retired from work in March of last year and woke up two days later with full onset pinpricks all over including my eyes. Mine is non-length dependent because it started all over my body. I had no idea till I saw a neurologist. I had the two vaccines in January with the last one on Jan. 29th. It was the around March 10th that they pinpricks started. I had a lot of testing done and the only thing that was positive was the skin biopsy for SNF. I did not consider the shots at all till recently. I asked the question of many people when after the shots did you experience issues. Some right after the shot and some not till weeks later. I wonder the same thing about the shots but I went in to see the ARNP for gastroenterology and she told me that since Covid started that a lot of people have ended up with gastro problems she thinks are related to the shots. I asked the neurologist on my first visit how many patients that he had woke up with full onset like I had. He said NONE. It is rare. I have since had the boosters and will continue to take them if they are offered. I believe in taking the shots. You can google things regarding the covid shots and symptoms. There is a group on Facebook that talks about it. I have done a lot of reading about it. I am a retired nurse and I have a firm belief that knowledge is good if you have something. I have a friend that said they take a certain medicine but don't know what it is for. I have another one that doesn't want to know certain things from her Doctor. I have seen that a lot over the years in patients. I want to know everything I can about this issue that I can find out. The neurologist checked me for a lot of the usual autoimmune diseases, genetic testing, heavy metals, vitamin B level. I had a brain scan. I have had other tests too. When they tell you it is idiopathic meaning no known cause that is difficult. People want to know. I write down questions that pop in my head and also after reading things about SNF. Good luck to you in your quest to find out information.

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Thank you so much for all your information. I appreciate it. I will continue to try and find out more about my condition. One neurologist told me small doses of neurontin help and also small amounts of CBD gummies.

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@kimegraves

Neuropathy symptoms are very painful and if left untreated can progress. If you are comfortable can you tell us what treatment you are receiving currently. I had similar symptoms after each Moderna vaccine. I am currently being treated by a neuromuscular specialist as well as a rheumatology physician. The vaccine is so new that many physicians are not familiar with the possible side effects post COVID vaccine. It is so important to find a physician that understands your symptoms and how they might be related to the vaccine and what the appropriate treatment is. Please keep seek treatment until you find some relief. Keep in touch.

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I just reread your reply to my concerns & questions regarding my neurological symptoms I've had since my 1st Moderna shot, 2/21. My nurse prac. still doesn't believe it's related to the vaccine, and believes my symptoms could be caused by a back problem. So she has ordered me to have an MRI to rule this out, before looking at the other possibilities. I am having the MRI next week & will get the results the following week. I'm going along with this procedure just to satisfy her recomendation - but I would rather her steer me directly to a Neurologist first. However, I live in a small town and we are limited to finding good specialists.
I do not have pain in my body - it is mainly the tingling sensations, but it is getting worse, and has moved from my feet into my upper body (hands, arms and even my heart, which really concerns me). I have also noticed that my memory has gotten much worse, and thinking this could all be related.
How are you doing with your treatment? Did you have any of these symptoms before your Moderna vaccine? If not, how soon did they appear after your vaccine? I truly don't believe its a coincidence that my symptoms appeared 3 days after my vaccine - especially since I'm in very good health otherwise. Thank you for taking the time to respond to my questions and concerns.

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Yes. Moderna. Also developed an autoimmune disease. Coincidence? Perhaps. But both developed after the initial series of vaccines.

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@africalady

I just reread your reply to my concerns & questions regarding my neurological symptoms I've had since my 1st Moderna shot, 2/21. My nurse prac. still doesn't believe it's related to the vaccine, and believes my symptoms could be caused by a back problem. So she has ordered me to have an MRI to rule this out, before looking at the other possibilities. I am having the MRI next week & will get the results the following week. I'm going along with this procedure just to satisfy her recomendation - but I would rather her steer me directly to a Neurologist first. However, I live in a small town and we are limited to finding good specialists.
I do not have pain in my body - it is mainly the tingling sensations, but it is getting worse, and has moved from my feet into my upper body (hands, arms and even my heart, which really concerns me). I have also noticed that my memory has gotten much worse, and thinking this could all be related.
How are you doing with your treatment? Did you have any of these symptoms before your Moderna vaccine? If not, how soon did they appear after your vaccine? I truly don't believe its a coincidence that my symptoms appeared 3 days after my vaccine - especially since I'm in very good health otherwise. Thank you for taking the time to respond to my questions and concerns.

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Hello,
Sorry you are continuing to have such difficult symptoms. In answer to your question, no I did not have these symptoms prior to my vaccine! I worked full time as an anesthesia provider and was healthy without any type of illness.

It might be a good idea to have your MRI just to rule out any spinal involvement.

Currently, I am receiving IgG infusions every three weeks and I am also receiving immunotherapy. My neurologist did say that he has treated many people for symptoms similar to ours and it was post vaccine. In the beginning I did have difficulty with my primary care MD getting diagnostic testing or referring me to specialty docs. I was very insistent that I see a neurologist and rheumatologist. It took 9 months until I finally got the diagnosis of CIPD related to COVID vaccine.

I hope that you get answers and please keep in touch.
Kim

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