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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

I received my 2nd dose in early Feb. Didn't start having issues for about a week afterwards. I didn't have prednisone until last week, so late July. If it didn't do it's job by then, so be it.

Seems it's not working for the vast majorities anyway since masks are going back in style throughout the country.

This is all just so craxy.

REPLY
@littlenoise

I received my 2nd dose in early Feb. Didn't start having issues for about a week afterwards. I didn't have prednisone until last week, so late July. If it didn't do it's job by then, so be it.

Seems it's not working for the vast majorities anyway since masks are going back in style throughout the country.

This is all just so craxy.

Jump to this post

Do you mean the vaccine is not working, or the prednisone?

Prednisone is notoriously fickle when it comes to neuropathy - some it works for, other it doesn't, still others need the dose tweaked to get results. Or sometimes another med can help.

As to the vaccine, some encouraging statistics have come out recently - depending on location, 90-90% of Covid hospitalizations, and 99%+ of Covid deaths are among the unvaccinated. So even if you get Covid after vaccination, you have a very good chance of a mild or asymptomatic infection.
The masks are being recommended because it appears that those who are vaccinated may be able to spread the infection. This is currently being studied at the University of Minnesota and several other locations. Stay tuned for further information.

Sue

REPLY

Yeah, sorry about that. I was just being cranky because I hate these masks.

REPLY

I am 46 and had sudden, persistent neuropathy approximately 2 weeks after receiving Moderna. That was 3 months ago and I still have it. Some days I have patchy numbness, other days I have intense electric pain in my arms and legs.

When the numbness started in my arms and legs, my doctors were concerned that I had Guillain Barre. That has since been ruled out. My blood work shows elevated Anti-MAG Antibodies and while my large nerves are healthy (confirmed with EMG), it seems my small fiber nerves have lost the ability to feel hot, cold and pain correctly. I am currently seeing 3 Neurologists, 2 at leading teaching hospitals. The current theory is that I am having ANS issues that are impacting my small fiber peripheral nerves. They have not been able to rule out the vaccine as the cause. Moderna, VAERS, and the CDC have an adverse event case file for me.

REPLY
@littlenoise

Yeah, sorry about that. I was just being cranky because I hate these masks.

Jump to this post

Oh, sorry to say, I think we all do!
I had a contractor today ask me if I ever had to work in the heat wearing a mask - I asked if refinishing woodwork in 90 heat in an unairconditioned garage counted and he said no. I might have gotten a little testy with him.

The more contagious Delta variant has set us all back on our heels - I hope the new studies being done will determine whether or not we can pass it on if we are vaccinated. As for us, we're back in masks because our little grands and their cousins can't get vaccinated yet.
Sue

REPLY
@jeanmmurph

I am 46 and had sudden, persistent neuropathy approximately 2 weeks after receiving Moderna. That was 3 months ago and I still have it. Some days I have patchy numbness, other days I have intense electric pain in my arms and legs.

When the numbness started in my arms and legs, my doctors were concerned that I had Guillain Barre. That has since been ruled out. My blood work shows elevated Anti-MAG Antibodies and while my large nerves are healthy (confirmed with EMG), it seems my small fiber nerves have lost the ability to feel hot, cold and pain correctly. I am currently seeing 3 Neurologists, 2 at leading teaching hospitals. The current theory is that I am having ANS issues that are impacting my small fiber peripheral nerves. They have not been able to rule out the vaccine as the cause. Moderna, VAERS, and the CDC have an adverse event case file for me.

Jump to this post

Sorry to hear that you too had a reaction to the Moderna vaccine. I too had the same symptoms after the Moderna vaccine with burning in arms and legs. Just had a follow up with my neurologist. He is pretty certain that it is the vaccine that caused my symptoms. Did not suggest anything other than Neurontin. He just said that it will get better on its own. Just wondering if your neurologist suggest any other treatment to speed the healing?

REPLY

Good morning all. I have autonomic SFN and am wondering if anyone else had the J&J vaccine. It wasn't my first choice but I made the first appointment I could and that's what they had.
I read yesterday that San Francisco is now offering booster shots of Pfizer or Moderna to immunocompromised persons who had J&J and whose doctors (apparently an increasing number) are asking for booster shots.
Has anyone's doctor suggested getting a booster shot whichever original vaccine you had?

REPLY
@jeanmmurph

I am 46 and had sudden, persistent neuropathy approximately 2 weeks after receiving Moderna. That was 3 months ago and I still have it. Some days I have patchy numbness, other days I have intense electric pain in my arms and legs.

When the numbness started in my arms and legs, my doctors were concerned that I had Guillain Barre. That has since been ruled out. My blood work shows elevated Anti-MAG Antibodies and while my large nerves are healthy (confirmed with EMG), it seems my small fiber nerves have lost the ability to feel hot, cold and pain correctly. I am currently seeing 3 Neurologists, 2 at leading teaching hospitals. The current theory is that I am having ANS issues that are impacting my small fiber peripheral nerves. They have not been able to rule out the vaccine as the cause. Moderna, VAERS, and the CDC have an adverse event case file for me.

Jump to this post

Hello @jeanmmurph and welcome to Mayo Clinic Connect. I am sorry to hear that you are going through this.

Fortunately, @sam90 noticed similarities in their experience and has reached out to connect with you and ask some questions of you as well.

How are you dealing with your symptoms?

REPLY

Deleted and moved to correct thread. Sorry.

REPLY
@amandajro

Hello @jeanmmurph and welcome to Mayo Clinic Connect. I am sorry to hear that you are going through this.

Fortunately, @sam90 noticed similarities in their experience and has reached out to connect with you and ask some questions of you as well.

How are you dealing with your symptoms?

Jump to this post

I am working with my PCP and a team of 3 neurologists. Because we haven’t been able to determine the exact process at play, but labs and exams are showing there is an issue, we are conservatively treating this as an inflammatory response using OTC drugs with histamine 1 and 2 receptors alternating Excedrin and Naproxen for pain relief. It hasn’t resolved the symptoms but it seems to have stabilized them for the most part so I am not getting any worse while we continue to run tests and labs to determine the etiology. Current thoughts are that I may be experiencing some level of Autonomic Nervous System dysfunction and a full ANS work up is scheduled for late August.

REPLY
Please sign in or register to post a reply.