COVID vaccines and neuropathy

Thank you for this article, Colleen. It helps to read and understand for those of us who have been severely (negatively) affected by the vaccine(s). I'm wondering if the neurology dept at Mayo will consider doing a study? While this support group chat is all very helpful (sharing of info, articles, patients sharing what supplements and meds have helped them recover), I would love to know if any of the docs at Mayo will ever give advice, are working on solving any of the side effects or if that is not a possibility? Some of us do not have health insurance that will cover going to a neurologist....or it is prohibitively expensive. The vaccine has caused pain and damage that is not being addressed by the medical community.......some doctors are not even admitting that it is the vaccine that caused symptoms. Lives are altered and some ruined. There are doctors (one famous doc in Denmark) who are helping people - will Mayo with its reputation and resources ever step in and provide more than a support chat? Thank you, Jen

Thank you for sharing the article, Colleen.

I am seeing a mayo neurologist in two weeks and I will be asking his opinion on the vaccine because that’s when my neuropathy began and got worse with booster.

My neuropathy in my Feet & Legs has been getting progressively sores over the past few months. I live a sedimentary live style and I know I should walk more; but with the Neuropathy and weight problems I find very difficult to walk any distance with out either needing to rest. [1/2 kl. is about all I can manage] So I have taken to using a Mobility Scooter around my town [too large to use in stores]. I use to use a Walker before things got as bad as has. I would like to know if there any medications /or devises that I could use to make my mobility better.
I try to get sleep, but sometimes its just not possible without tiring my self out [Hot Baths etc.] So any recommendations would be greatly appreciated. By the way I live in British Columbia, Canada T.Y Leonard

Welcome Leonard @leonard1946bowring, I don't have sores on my feet and legs but I do have issues walking any distance due to my back. It has gotten better for me after losing weight but that was just part of my problem. I have a home exercise bike that I try to use 30 to 45 minutes 3 or 4 days a week to help with leg strength. An inactive lifestyle is definitely not your friend if you have neuropathy. Here is some information from the Foundation for Peripheral Neuropathy that might be helpful:

-- Exercise + Physical Therapy For Neuropathy: https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/

You mentioned progressive sores on your feet and legs. Are you diabetic? Have you seen a doctor about the sores on your feet and legs?

I was healthy 54 got the first shot moderna and 5 days later got covid. I was set to get the second vaccine called cdc and a doctor asked if it would be ok they advised yes. I received the 2 nd shot and developed neuropathy 4 days later. I am currently still experiencing neuropathy and no one can figure it out why

I cant be sure but it all started after the shot and when they asked me on surveys to told them but never follow up.

Someone posted a video somewhere on Mayo Connect that was done in the last couple of years about peripheral neuropathy from chemo. It was hosted by a doctor from Johns Hopkins, and a Dr. Stephanie Geisler from Washington university. It talked about Cymbalta, and many other studies. I need this link again! and can't find it.

Welcome @ladytnac, I posted the Webinar: Chemo-Induced Peripheral Neuropathy video in another discussion here - What helps the symptoms of Small Fiber Neuropathy?: https://connect.mayoclinic.org/comment/666818/.

It was a video sponsored by the Foundation for Peripheral Neuropathy. You can find all of their previous videos here - https://www.foundationforpn.org/resource-library/.

Do you have chemo induced neuropathy?

Thank you, John. I ultimately found the video on youtube, but since I am a new member to this site, it won't let me its URL links. It is one of the FPN videos from 2020 on CIPN called Chemo-Induced Peripheral Neuropathy.
It was an informative video. I will be having breast surgery due to Triple Negative Apocrine Cancer, then starting chemo in a month doing a regimen that include Taxene drugs like Taxol or Taxotere (sp?) depending on the result of my sentinel node biopsy. I know that CIPN is highly probable, especially since I have a little in my foot already, before even beginning chemo! I am so very frightened of all the side effects in addition to the surgery and the cancer... It has been less than 2 months since I have been diagnosed with cancer.