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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It all depends who you get. I have had great PA and MDs and vice versa.

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@dbeshears1

I used to feel the same way re: PA vs MD to see me; if I was given a choice, I picked MD because I feel my total health picture is too complicated and needs MD. However, I’ve come to accept that I will (and do) have many PA’s, and they’ve become front line expectation in these parts anymore. I’m happy to report I’ve had great experience with them, often better than MD! Yes, I do have waits after my appointments because there are things they need to followup with the MDs on before getting back with me, but c’est la vie. I had an MD Cardiologist appointment 2 weeks ago and he coached me to get used to PA’s, that he was sad to report that “Corporate Medical Care” has the cost cutting strategy of recruiting and employing more PAs now vs MDs and PAs will be frontline, MDs further removed. Being former corporate, I know how it was done to accountants, engineers, and many other disciplines. So now it’s in medicine in some parts; some believe that PAs are as good as doctors, just paid less. I’m thinking positive since I’ve had great PAs, trust the MDs are in the background and available for emergencies, and hoping they might even be being freed up to help with research and cures for mystery illnesses like our own!

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Yes, you are correct. This is the way medicine is going now. Some of the practices have had the same PA for years and they are great, but many, like the cardiologists in my town, have rotating PAs that are not familiar with the speciality at all. It's the luck of the draw around here. And even the PAs have month long waiting lists. They also utilize alot of nurse practitioners in my area and in New Mexico and Colorado they are independent practitioners who do not report back or collaborate with anyone.

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@selene53

Thank you for this information. I am hoping you are right. Yes, so challenging to get an appointment with a neurologist. Also, here in my area, challenging for a cardiologist or gastroenterologist appointment, even orthopedics. Most likely your first appointment will be with a PA or NP. With all due respect, when I make a doctor's appointment, I want to see the doctor. And I am an RN. Good luck to you.

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If you haven't joined yet, I recommend joining the Neuro V Long-Haulers Facebook group. There is a lot of educational information about neurological injuries due to the Covid vaccines and it is continually updated by patients. Many of the patients have small-fiber neuropathy, which can be difficult to diagnose. I have Pfizer vaccine-associated nerve damage that could be documented easily by EMG.

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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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@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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@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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@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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@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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