1. < Neuropathy

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 | @saski | Jan 27, 2022
In reply to @austintraining "I believe this gentleman is also receiving the same with some early success. Have you seen..." + (show)
@austintraining

I believe this gentleman is also receiving the same with some early success. Have you seen this video?
https://youtu.be/SobqUw7gqhs

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brilliant. Thanks for the share Andrea.

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emf21 | @emf21 | Jan 29, 2022

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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2 replies
saski | @saski | Jan 29, 2022
In reply to @dhamil "I have SFN resulting from the first dose of Pfizer. It’s been 9 months and now..." + (show)
@dhamil

I have SFN resulting from the first dose of Pfizer. It’s been 9 months and now is getting worse. My Doctor suggested I take 25mg prednisone for 14 days to see if it will calm it down. He’s not convinced it will work but said you never know. I’m concerned I may have withdraw side effects from stopping all at once. I don’t recall seeing any posts of anyone being prescribed steroids. Has anyone been given this dose of prednisone without a taper and did you do ok just stopping it? Or has anyone been given a different dose of prednisone or other types of steroids and was it helpful with your symptoms and if so did it last? From what I’ve read prednisone is great but has more side effects then others steroids and some people can have a hard time stopping with no taper after just one week?

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

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1 reply
dhamil | @dhamil | Jan 29, 2022
In reply to @saski "best not to stop abruptly-tapping off is preferable. Mum was on it and advised not to..." + (show)
@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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1 reply
pacer3702 | @pacer3702 | Jan 30, 2022
In reply to @emf21 "My numbness, tingling, hot and cold sensations started about 5 weeks post Moderna 2nd injection. Prior..." + (show)
@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.

Jump to this post

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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2 replies
saski | @saski | Jan 30, 2022
In reply to @dhamil "From what I read the dosage and how long it’s taken make a difference and that..." + (show)
@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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1 reply
kimegraves | @kimegraves | Jan 30, 2022
In reply to @emf21 "My numbness, tingling, hot and cold sensations started about 5 weeks post Moderna 2nd injection. Prior..." + (show)
@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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1 reply
emf21 | @emf21 | Jan 30, 2022
In reply to @kimegraves "Please make an appointment with a neurologist!!!!! Did you have an EMG or a lumbar puncture???????" + (show)
@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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1 reply
emf21 | @emf21 | Jan 30, 2022
In reply to @pacer3702 "I had a similar timeline - the first time I had pins and needles in my..." + (show)
@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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1 reply
dhamil | @dhamil | Jan 31, 2022
In reply to @saski "A standard dose not low dose so that may be an important distinction. She was a..." + (show)
@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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