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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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 25, 2022
In reply to @africalady "3 days after receiving my first Moderna vaccine, I developed nerve problems in my calfs &..." + (show)
@africalady

3 days after receiving my first Moderna vaccine, I developed nerve problems in my calfs & feet, which I believe to be a form of Neuropathy. It started out with a burning sensation in my calf and then started tingling continuously. After a week or so, it started to go away, but has returned several times since over the past year and now has gotten worse. It feels likes it is travelling throughout my body at times, where all my nerves are tingling, which is very uncomfortable. What can I do for it? I have talked with 4 other people who have had similar reactions to the Moderna vaccine, and I'm wondering who else has had this problem & what are they doing about it? Thank you

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Welcome @africalady. You'll notice that I moved your question about neuropathy and vaccination to this existing discussion:
- COVID vaccines and neuropathy https://connect.mayoclinic.org/discussion/covid-vaccines-and-neuropathy/

I did this so you can connect with others who are dealing with neuropathy and what works for them.

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1 reply
africalady | @africalady | Apr 25, 2022

I never had neuropathy before, but 3 days after my first Moderna Vaccine, I did start getting it, and now, 14 months later, it is getting worse.

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3 replies
africalady | @africalady | Apr 25, 2022
In reply to @colleenyoung "Welcome @africalady. You'll notice that I moved your question about neuropathy and vaccination to this existing..." + (show)
@colleenyoung

Welcome @africalady. You'll notice that I moved your question about neuropathy and vaccination to this existing discussion:
- COVID vaccines and neuropathy https://connect.mayoclinic.org/discussion/covid-vaccines-and-neuropathy/

I did this so you can connect with others who are dealing with neuropathy and what works for them.

Jump to this post

Thank you - this will be helpful to hear from others with similar problems.

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silvern12 | @silvern12 | Apr 25, 2022
In reply to @jomo "“As to attributing symptoms to a single incident, that can be shaky as well.” All I..." + (show)
@jomo

“As to attributing symptoms to a single incident, that can be shaky as well.”

All I know is this: Before April 24th, 2021 (the day of my second Moderna shot) I had no symptoms of anything health-related, Covid, prediabetes or otherwise.

Two days later I had burning sensations in my lower left leg. By the first week of May my left foot went numb and I lost hair on my legs. By mid-May I had carpal tunnel and pulsing sensations up my forearms. By end May, orthostatic hypotension and constipation. By June, cubital tunnel. By August my right foot went numb. By my 42nd birthday in October, tinnitus and visual acuity decline. By December, eye cotton wool spot. By January, erectile dysfunction. By February Raynauds/cyanosis. My Apple Watch has been notifying me of atrial fibrillation for the last month…

I have had Covid PCR tests weekly since before this started. Negative each time. Strict diet. No alcohol. Daily exercise.

There is no way on Earth that this was in any other possible regard NOT all attributed to a single event.

I’m very sorry, but I don’t care about your uncited numbers of the presumably unscathed vaccinated US population. I know what happened to me, when it all started and what started it.

There have been people (like myself) seriously and directly injured by these mRNA vaccines, and for anyone to even imply otherwise is honestly rather insulting.

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Totally agree and whats frustrating is drs just don’t want to hear it.

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bowerstx | @bowerstx | Apr 25, 2022
In reply to @jomo "Thanks for the heads up on plavix and pentoxifylline. I have an arterial/venal Doppler scan and..." + (show)
@jomo

Thanks for the heads up on plavix and pentoxifylline. I have an arterial/venal Doppler scan and consult w/ my vascular specialist next week and will mentions these.

I’ve been on daily 81mg aspirin since late 2019. I too believe this is all due to micro-clotting. There are some great recent videos confirming such on Dr. Mobeen Syed’s YouTube channel (“Dr Been”).

My fear with possible IVIg therapy (as that’s seemingly the most efficacious of the three for severe autoimmune inflammatory conditions thus far) is (1) pulmonary embolism (2) stroke and (3) thrombosis. All of these including aseptic meningitis are listed as severe side effects of that therapy. Who needs more (and bigger) clots? …especially at the cost of that treatment.

You mention you “had” SFN after Pfizer. Did that go into remission? If so, how long did it take?

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Same SFN. My fatigue and energy level are better but still with numbness and autonomic neuropathy. Hoping to get some nerve regeneration over the next year. I've watched a ton of Dr Been. I also would be a bit nervous about IVIG for your same reasons.

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Beth Wiseman | @bethwiseman | Apr 26, 2022
In reply to @africalady "I never had neuropathy before, but 3 days after my first Moderna Vaccine, I did start..." + (show)
@africalady

I never had neuropathy before, but 3 days after my first Moderna Vaccine, I did start getting it, and now, 14 months later, it is getting worse.

Jump to this post

My SFN definitely got worse after my first Moderna vaccine.

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Beth Wiseman | @bethwiseman | Apr 26, 2022

I had Covid and was very sick for 3 weeks and I never had any symptoms of my SFN. Recently I had a stomach virus and once again no signs of my SFN. I think this is very interesting and would love for this to be studied by doctors.

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kimegraves | @kimegraves | Apr 26, 2022
In reply to @africalady "3 days after receiving my first Moderna vaccine, I developed nerve problems in my calfs &..." + (show)
@africalady

3 days after receiving my first Moderna vaccine, I developed nerve problems in my calfs & feet, which I believe to be a form of Neuropathy. It started out with a burning sensation in my calf and then started tingling continuously. After a week or so, it started to go away, but has returned several times since over the past year and now has gotten worse. It feels likes it is travelling throughout my body at times, where all my nerves are tingling, which is very uncomfortable. What can I do for it? I have talked with 4 other people who have had similar reactions to the Moderna vaccine, and I'm wondering who else has had this problem & what are they doing about it? Thank you

Jump to this post

I had the Moderna vaccine as well and developed similar symptoms. It took almost one year and several visits to multiple physicians and I finally have a diagnosis of CIDP
possibly from the vaccine. I am a health care provider myself and I had to be very vigilant in my own care until a diagnosis was made. What finally caught my providers attention was the results of my EMG. I am currently receiving IgG infusions and immunotherapy. I don’t think I will ever be cured but with medical therapy I can function without constant pain or muscle weakness.
My advise to you is be strong and if you are not satisfied with your diagnosis and treatment find another provider. Many times neurologist that specializes in neuromuscular disorders are familiar with complications post COVID vaccine. Be strong and stay in touch with this group.

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1 reply
kimegraves | @kimegraves | Apr 26, 2022
In reply to @africalady "I never had neuropathy before, but 3 days after my first Moderna Vaccine, I did start..." + (show)
@africalady

I never had neuropathy before, but 3 days after my first Moderna Vaccine, I did start getting it, and now, 14 months later, it is getting worse.

Jump to this post

Neuropathy symptoms are very painful and if left untreated can progress. If you are comfortable can you tell us what treatment you are receiving currently. I had similar symptoms after each Moderna vaccine. I am currently being treated by a neuromuscular specialist as well as a rheumatology physician. The vaccine is so new that many physicians are not familiar with the possible side effects post COVID vaccine. It is so important to find a physician that understands your symptoms and how they might be related to the vaccine and what the appropriate treatment is. Please keep seek treatment until you find some relief. Keep in touch.

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