COVID vaccines and neuropathy
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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My heart goes out to you.
We are also dealing with this issue. It’s just the worst not being believed- let alone not having answers. 🙏
Vaccine injury is real - rare I hope, but real.
Wish there was a central voice and supportive mainstream MD’s .
In reply to @lorilee13
Your story sounds a lot like mine .
Dear Amanda, thank you for this! I'm aware of the group but didn't see how I could put my question there without hopping on to somebody else's text. And yes I'm aware of the half dose thing of Moderna (a bottle contains double the amount of mrna as Pfizer) and after the side effects got worse and lasted longer after every shot I decided that either I would take half a dose, or not at all. Well, my doctor wouldn't have the latter, so tomorrow a nurse will pass by my place for the booster shot. Let's hope it gets a bit better this time.
Thank you so much for your words! This is exactly how I feel and dare I say, how I think most of us who are suffering from all of this feel. Acknowledgement is the key. Without that, we cannot move forward - to treatment, possibly cure ( why not), and understanding from the community as a whole. This is what I have been searching for since February 2021 when this all happened to me. If there is that acknowledgement now, I am happy to hear it. I'm still waiting to hear neuropathy announced as a possible adverse effect from this vaccine - as has been done for other conditions. Then, I will believe we are on the right path.
Getting the Moderna booster today (half a dose) and will keep you updated here.
You don't get it to prevent transmission to others (for that a face mask works better), you get it to prevent you from ending up in hospital or even dying. Since people get the vaccinations and boosters, a lot less people end up in hospital with Covid, so it has become a bit more easy on the medical system.
I think acknowledging any link may come, in time, when it can be scientifically proven. This all happened so fast to get the safest, quickest remedy that could be put together that was felt best to fight the nasty and lethal pandemic. As another contributor said, it all came with risks we had to decide to take for ourselves, with or without personal medical advice from our doctors, politicians, or the media. It is so unfortunate it takes years to collect proper data. Had they waited to test the vaccine in more depth before offering it, the pandemic would be no doubt more catastrophic. So it came down to difficult choices for all of us. I understand the frustration of wanting our Neuropathy causes perfectly known. Many of us that had Neuropathy before Covid ever came along are waiting to have our reasons found, despite our theories we have. I have not been a poster child for having patience to get Neuropathy understood since the disease has been around so long, but am learning that other diseases have a lot of unknown causes or cures. I hope the understanding of all possible proven risks of the Covid vaccine doesn’t take years, but because of the many many different side effects people report from vaccines and other drugs, I suspect it will.
I'm a little confused. Are you saying you have neuropathy after your COVID vaccines and you're planning on getting the booster? Am I understanding this correctly?
No, I developed peripheral neuropathy after a brain stroke, cauda equina syndrome and a spinal stroke. The vaccines made it worse temporarily, esp in the legs. They became really stiff and painful but after 6 weeks (last booster) it subsided. I'm curious to see what a half dose booster will do. Git it this morning. I prefer 6 weeks of pain to getting a bad case of Covid, that's for sure.
Meant to say normal EMGs rule out CIDP (not EKGS)