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?

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Two of my friends said they have noticed my head has movement when I am with them, I wondered if this could be related to the covid vaccine? My hands also feel a little shaky every now and then.

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After second shot. Of maderna, my neuropathy started.

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Profile picture for selene53 @selene53

Update: Well, 6 months after my numbness and tingling began after my 4th mRnA shot the symptoms are still continuing. Today was a particularly bad day with the neuropathies. I felt like my legs were vibrating and at the same time really heavy. My doctors here have given up on me, I think. I'm scheduled to have a brain MRI in a few weeks, but the neurologist said "Probably won't tell us anything". The neurologist that was recommended in Denver is scheduled 6 months out and then there is a huge waiting list for 2023. I said to the scheduler, "So, in other words, hopeless". She said, "Pretty much for new patients." I asked the one neurologist in my town about a skin biopsy for small fiber neuropathy diagnosis and she said, "We don't do that here". So , Denver seems hopeless and now I'm considering Mayo Clinic in Scottsdale, but don't even know where to begin to find a doctor there. Open to any suggestions. Thanks in advance.

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Would your local Dr be able to make a referral to Mayo for you to see a neurologist? I don’t know if it will work but I saw a local internal medicine Dr last Thurs who took my symptoms serious and has given me a written order/referral to see a neurologist if I can find one and he said he would do the Mayo referral as well. I’m going to follow up with his office tomorrow and will let you know if it works. My symptoms are now impacting not only hands with numbness and tingling but also legs with unsteady walking and my hands are clumsy too makes it difficult to type for my work. I also feel coldness in my hands and forearms. Then last week I started feeling numbness/coldness/burning in my trunk area lower back and across abdomen so it’s still progressing. My Dr last week thinks since it’s been 6 weeks since start of symptoms it’s likely not GBS however he mentioned there were other conditions that progress more slowly that I need evaluated for. One that I found researching online is CIDP
chronic inflammatory demyelinating polyradiculoneuropathy.

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Profile picture for debbie2252 @debbie2252

Would your local Dr be able to make a referral to Mayo for you to see a neurologist? I don’t know if it will work but I saw a local internal medicine Dr last Thurs who took my symptoms serious and has given me a written order/referral to see a neurologist if I can find one and he said he would do the Mayo referral as well. I’m going to follow up with his office tomorrow and will let you know if it works. My symptoms are now impacting not only hands with numbness and tingling but also legs with unsteady walking and my hands are clumsy too makes it difficult to type for my work. I also feel coldness in my hands and forearms. Then last week I started feeling numbness/coldness/burning in my trunk area lower back and across abdomen so it’s still progressing. My Dr last week thinks since it’s been 6 weeks since start of symptoms it’s likely not GBS however he mentioned there were other conditions that progress more slowly that I need evaluated for. One that I found researching online is CIDP
chronic inflammatory demyelinating polyradiculoneuropathy.

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Yes, please keep me updated . My doctor also said that she would give me a referral to whoever I wanted. The issue was still the 6 month wait.

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Profile picture for selene53 @selene53

Update: Well, 6 months after my numbness and tingling began after my 4th mRnA shot the symptoms are still continuing. Today was a particularly bad day with the neuropathies. I felt like my legs were vibrating and at the same time really heavy. My doctors here have given up on me, I think. I'm scheduled to have a brain MRI in a few weeks, but the neurologist said "Probably won't tell us anything". The neurologist that was recommended in Denver is scheduled 6 months out and then there is a huge waiting list for 2023. I said to the scheduler, "So, in other words, hopeless". She said, "Pretty much for new patients." I asked the one neurologist in my town about a skin biopsy for small fiber neuropathy diagnosis and she said, "We don't do that here". So , Denver seems hopeless and now I'm considering Mayo Clinic in Scottsdale, but don't even know where to begin to find a doctor there. Open to any suggestions. Thanks in advance.

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I am so sorry to hear about your illness. Six months to wait for a neurologist is crazy, Denver is a large city and it should not take the long. I am a provider myself and sometimes if I refer someone to another specialty I call myself and talk with the provider and most times they try to work the patient in. Can you ask your primary care provider to call the neurologist and discuss your situation with them and perhaps they can get you in sooner than 6 months. Have you had an EMG? Perhaps with the paresthesia you might suggest that. I sure hope you can find help. Please keep us informed.
Kim

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Profile picture for kimegraves @kimegraves

I am so sorry to hear about your illness. Six months to wait for a neurologist is crazy, Denver is a large city and it should not take the long. I am a provider myself and sometimes if I refer someone to another specialty I call myself and talk with the provider and most times they try to work the patient in. Can you ask your primary care provider to call the neurologist and discuss your situation with them and perhaps they can get you in sooner than 6 months. Have you had an EMG? Perhaps with the paresthesia you might suggest that. I sure hope you can find help. Please keep us informed.
Kim

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I did have an EMG which was normal. And I am scheduled for a brain MRI this week. I finally managed to get a video appointment with a Denver neurologist in 2 months at the university hospital, so hopefully that will open the door for me for more definitive testing. There is virtually nothing here in the small town I live in. I am 69 years old, with a disabled husband, and no other family so it's a journey for me to drive 7 hours, one way to Denver, but I am willing to do it. I asked my PCP about a referral and she said she would be happy to make one, if I found the neurologist I wanted to go to, but he's the one with the 6 month wait and I was told even his own established patients have a several month wait for an appointment. So, we'll see. Thank you very much for your suggestions.

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My neuropathy gets worse when I have COVID vaccine. I also get muscle weakness. Has anyone else had this problem?

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Profile picture for beegie @beegie

My neuropathy gets worse when I have COVID vaccine. I also get muscle weakness. Has anyone else had this problem?

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Hi @beegie - thanks for your question. I've merged your discussion here as I think you'll be able to find some answers and some good comments in this thread. Please let me know if you have any additional questions!

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Profile picture for beegie @beegie

My neuropathy gets worse when I have COVID vaccine. I also get muscle weakness. Has anyone else had this problem?

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Yes several people myself included

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Profile picture for mike26 @mike26

After second shot. Of maderna, my neuropathy started.

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After my second Pfizer my involuntary movements started !!

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