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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@emf21

Thanks for sharing your experience. In addition to the Neuropathy issues did you also suffer from numbness down one side of your body?

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I had numbness in my calves and feet. Now it is confined to my feet and improving. It is aggravated by sitting for extended periods. Originally, it was aggravated by sitting even for brief periods. I was thoroughly evaluated for a contributing orthopedic cause such as a pinched nerve in my lower back and there is none. It seems the autoantibodies may also have attacked and inflamed my spinal chord. At the peak, I could greatly reduce the nerve pain and numbness in my feet, if I avoided sitting. Because this is not typical of peripheral neuropathy, I consider it further evidence of an adverse reaction to the vaccine.

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@emf21

I saw a Neurologist who did a nerve study test and she said I have mild Neuropathy on both sides, buttocks down to feet. However, she would not discuss anything with me as she made it clear that she was not part of evaluating me and that I needed to talk to my doctors because she was only performing the test for them. I've had a CT with contrast of Thoracic spine and a Myelogram of Lumbar. I've also had a MRI of Lumbar (ordered by Neurosurgeon). O have a Thoracic and Cervical Spine MRI scheduled for later this week. This has been a true mystery.

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You saw a neurologist who only performs EMG studies. Now you need an appointment with a neurologist who will do blood work to search for an underlying cause. You should have your ANA autoantibody titer checked and also Sjögren’s B autoantibodies checked. Both of those were elevated for me, which is similar to long-Covid. However, I never had Covid. I also do not have Sjögren’s. There are similarities between adverse reactions to the vaccines and long-Covid.

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@pacer3702

I had numbness in my calves and feet. Now it is confined to my feet and improving. It is aggravated by sitting for extended periods. Originally, it was aggravated by sitting even for brief periods. I was thoroughly evaluated for a contributing orthopedic cause such as a pinched nerve in my lower back and there is none. It seems the autoantibodies may also have attacked and inflamed my spinal chord. At the peak, I could greatly reduce the nerve pain and numbness in my feet, if I avoided sitting. Because this is not typical of peripheral neuropathy, I consider it further evidence of an adverse reaction to the vaccine.

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@emf21 my symptoms have been mostly attributed to an immune response “attacking” an area which was already compromised - in my case pinched nerve roots at S1. I have had symptoms elsewhere in my body but overwhelmingly in my feet and my right leg. It mostly follows a sciatic pattern. Of course it’s only a theory at this point but it seems the most likely scenario. I have had back problems for years but after receiving my first vaccine, I literally overnight developed the intense symptoms that I now experience. Interestingly, I also have notice occasional mild hand and arm weakness, and I also have cervical spine problems. Also never had these symptoms pre-vaccine. Over a year and still counting for me.

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@pacer3702

You saw a neurologist who only performs EMG studies. Now you need an appointment with a neurologist who will do blood work to search for an underlying cause. You should have your ANA autoantibody titer checked and also Sjögren’s B autoantibodies checked. Both of those were elevated for me, which is similar to long-Covid. However, I never had Covid. I also do not have Sjögren’s. There are similarities between adverse reactions to the vaccines and long-Covid.

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My response was crazy high ANA, low WBC count and small fiber neuropathy in my sweat glands post vax. Lots of dr visits. Anyone got an official diagnosis?

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@lk61

@emf21 my symptoms have been mostly attributed to an immune response “attacking” an area which was already compromised - in my case pinched nerve roots at S1. I have had symptoms elsewhere in my body but overwhelmingly in my feet and my right leg. It mostly follows a sciatic pattern. Of course it’s only a theory at this point but it seems the most likely scenario. I have had back problems for years but after receiving my first vaccine, I literally overnight developed the intense symptoms that I now experience. Interestingly, I also have notice occasional mild hand and arm weakness, and I also have cervical spine problems. Also never had these symptoms pre-vaccine. Over a year and still counting for me.

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My nerve damage post-vaccine is not symmetrical. For that reason, the 3 different neuromuscular specialists who performed the 3 EMGs each reported a sciatica-like pattern. However, lumbar nerve compression and sciatica were ruled out by each of two outstanding spine surgeon's.
I share your theory that pre- existing nerve damage may explain my susceptibility to immune-mediated nerve injury from the vaccine. For 5 years, I had very mild, stable nerve damage in my feet due to inappropriately-prescribed metronidazole. It was expected during vaccine development that those most likely to be adversely affected by the vaccine, if there were adverse effects, would be those with pre-existing nerve injury.

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@aerc25

My response was crazy high ANA, low WBC count and small fiber neuropathy in my sweat glands post vax. Lots of dr visits. Anyone got an official diagnosis?

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My official diagnosis is acquired monophasic sensory and motor peripheral neuropathy. The only acquired insult I could have had during that period was the vaccine. I was living in isolation and working from home with a stable lifestyle. My neurological symptoms began 2 weeks after the first vaccine. I passed the sweat test for autonomic neuropathy, but there are many patients in the Neuro V Long-Haulers Facebook group reporting autonomic neuropathy.

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Due to my immunocompromised state , I was advised to obtain the 4th covid booster, which I did on Jan 28, with my 4th Pfizer dose given. I had zero problems with the first three, so I figured, no problem. However that night buzzing and tingling started in my feet, which then has moved up my calves and tingling in my fingers. Of course, being an RN, I immediately jumped to the most catastrophic conclusion...Guillane Barre, however, I have no weakness. Yet. I researched this exhaustively and could find nothing on the American sites. I did however find on a European site, that added "paraesthesias, unusual feelings in skin, should be added to the side effects of the Comirnaty vaccine",which is what the Pfizer vaccine is called in Europe.I have no history of neuropathy, except during cancer treatment many years ago. There is nothing to suggest how long this will last, if it progresses or what treatment should be instituted. I tried to make an appointment with a neurologist, no luck without a referral from my primary, who is 3 weeks out from appointments. And who, I feel, will not take this seriously. I live in the remote southwest and have very little access to medical care. Our local hospital is overrun with unvaccinated covid patients, so the ER is not an option. In any case, I thought I would take extra B vitamins, magnesium and try to somehow obtain a prescription for gabapentin. I would be interested in any others who have had a similiar experience.

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@pacer3702

My nerve damage post-vaccine is not symmetrical. For that reason, the 3 different neuromuscular specialists who performed the 3 EMGs each reported a sciatica-like pattern. However, lumbar nerve compression and sciatica were ruled out by each of two outstanding spine surgeon's.
I share your theory that pre- existing nerve damage may explain my susceptibility to immune-mediated nerve injury from the vaccine. For 5 years, I had very mild, stable nerve damage in my feet due to inappropriately-prescribed metronidazole. It was expected during vaccine development that those most likely to be adversely affected by the vaccine, if there were adverse effects, would be those with pre-existing nerve injury.

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@pacer3702 thank you. My neurologist, who is about the most passive and uninterested physician I have ever seen, actually put forth that theory to me several months ago. I find it interesting that you mentioned metronidazole. I have wondered more than a few times if a very brief course I had of it could have also contributed to my issues. I was prescribed it in November, 2020. I was given to me by an urgent care doc for what I suspected was a UTI. At the time I wasn’t crazy about that particular antibiotic being used, but as I was getting ready to leave on a 2-week trip the next day, I was preoccupied and not able to pursue other options. I ended up taking it for only 5 days total. Then in Dec. 2020, the day after my first COVID shot, my other symptoms started. With the timing being so precise with the vaccine, I’ve only given the Flagyl a passing thought, especially since I was only on it 5 days. But yes, it has crossed my mind for sure.

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@pacer3702

I had a similar timeline - the first time I had pins and needles in my feet was 6 weeks after the 2nd Pfizer vaccine. But I had muscle spasms in my toes that began 2 weeks after the 1st Pfizer vaccine. The neurologists have indicated the toe spasms were also neurological. My symptoms peaked about 6 months after the second vaccination, but then began to slowly improve. But I am not fully recovered. Other patients in the Facebook Neuro V Long-Haulers group are reporting similar timeliness. I hope your symptoms will soon begin to improve.

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I took the Modern shots in January of last year. My last one was Jan. 29th. In March 6 weeks to the day from the last shot I woke up two days after I retired from nursing and had full onset of pin pricks everywhere including eyes. It took me two months to see a neurologist. I never asked about the shot because I hadn't heard anything about it. Didn't even think about it. I had EMG, lots of blood work and biopsy. The biopsy confirmed that I had SNF. Mine is idiopathic for now. I also have a burning pain in my left hand that comes and goes. It starts at the wrist then goes to between the ring and pinky finger. In April I woke up on a Sunday and my chest felt funny and I thought my palpitations were acting up. I have had them forever no big deal. Only it wasn't palpitations. My cardiologist had done some tests including a heart monitor and it showed my heart rate was 183 at its highest. I am taking metoprolol ER for the heart rate. I also saw a neuro-opthalmologist who did say the pin pricks are connected. My neurologist said it is rare for a person to wake up with full onset of what I had. I am going to see a Dr. soon whose hospital is connected to Mayo and I am going to ask for a referral to them. I saw one lady say it would be a year before an appt. But another Dr. said if the hospital is associated with Mayo I might be able to get an appt. I don't know. I saw something on here about people sending bloodwork to Germany? regarding the shots. I feel like my heart rate going up could be connected to my SNF because my cardiologist hasn't given me a reason for it being high. Thank God I had no other issues with my heart. I wonder somehow if all this is connected. I feel like it is. My pin pricks are annoying especially in my eyes and except for my heart I am luckier right now that a lot of other people who have a great many more issues than myself.

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@pacer3702

My nerve damage post-vaccine is not symmetrical. For that reason, the 3 different neuromuscular specialists who performed the 3 EMGs each reported a sciatica-like pattern. However, lumbar nerve compression and sciatica were ruled out by each of two outstanding spine surgeon's.
I share your theory that pre- existing nerve damage may explain my susceptibility to immune-mediated nerve injury from the vaccine. For 5 years, I had very mild, stable nerve damage in my feet due to inappropriately-prescribed metronidazole. It was expected during vaccine development that those most likely to be adversely affected by the vaccine, if there were adverse effects, would be those with pre-existing nerve injury.

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I find your theory interesting. My story has nothing to do with the Covid vaccine, I already had neuropathy before the vaccine. But I was diagnosed with throat cancer (non-smoker) 2 years ago, and when I was compromised from radiation and chemo treatments I got shingles. The place I got shingles was on my inside arm near my elbow, right smack at the site of 2 previous surgeries for an entrapped ulna nerve., which were both before I came down with neuropathy. 1 year later, I still have occasional dull pain from the shingles up and down the ulna nerve from shoulder to fingers. So I believe your theory that previous nerve injury makes sites more susceptible to things, though my doctor, who admits never before seeing shingles on an arm where I had it, says the sight was merely coincidence…..

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