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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Profile picture for saski @saski

best not to stop abruptly-tapping off is preferable. Mum was on it and advised not to stop suddenly.

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From what I read the dosage and how long it’s taken make a difference and that tapering is standard. Do you know if your mom was on a low dosage/short time span before tapering off? I have an appt with my Primary care Doctor to get her thoughts on this.

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Profile picture for emf21 @emf21

My numbness, tingling, hot and cold sensations started about 5 weeks post Moderna 2nd injection. Prior to the vaccine I never had nerve pain or numbness before. Here I am 5 months later with no improvement and increase in nerve pain especially my right foot, ankle and Achilles area.

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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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Profile picture for dhamil @dhamil

From what I read the dosage and how long it’s taken make a difference and that tapering is standard. Do you know if your mom was on a low dosage/short time span before tapering off? I have an appt with my Primary care Doctor to get her thoughts on this.

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A standard dose not low dose so that may be an important distinction. She was a bit of a non-compliant patient and went off abruptly much to my dismay.
All the best with your situation. Hope the doctor has some good guidance for you.

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Profile picture for emf21 @emf21

My numbness, tingling, hot and cold sensations started about 5 weeks post Moderna 2nd injection. Prior to the vaccine I never had nerve pain or numbness before. Here I am 5 months later with no improvement and increase in nerve pain especially my right foot, ankle and Achilles area.

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Please make an appointment with a neurologist!!!!! Did you have an EMG or a lumbar puncture???????

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Profile picture for kimegraves @kimegraves

Please make an appointment with a neurologist!!!!! Did you have an EMG or a lumbar puncture???????

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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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Profile picture for pacer3702 @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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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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Profile picture for saski @saski

A standard dose not low dose so that may be an important distinction. She was a bit of a non-compliant patient and went off abruptly much to my dismay.
All the best with your situation. Hope the doctor has some good guidance for you.

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Thanks for sharing that. I’m not sure if 25mg is considered low or standard. I see my PCP this week.

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Profile picture for emf21 @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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Profile picture for emf21 @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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Profile picture for pacer3702 @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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