COVID vaccines and neuropathy

Hello @kbirchem and welcome to Mayo Clinic Connect. Thanks for being vulnerable and sharing your thoughts and concerns. So many other members can relate, especially if they are at a place in their life where they are also facing multiple health conditions.

I wonder if you've taken a listen to podcasts from Dr. Poland. They have truly been an evolution of all things COVID and vaccines as the world quickly learns about each new development. Dr. Poland has a really great way of sharing what can be complex information on this topic in a way that is easy to digest. As you explore what makes sense for you and weigh the pros and cons, I thought this information may be helpful. Go to the link below and use the search box on the upper right using "Dr. Poland": https://connect.mayoclinic.org/newsfeed/

If you knew you wouldn't have adverse side effects, would you wish to be vaccinated?

Ni way !!!

How does .Mayo clinic treat peripheral neuropathy . The Fsrgo VA just wants to throw
More meds at me .

I was also put on rosuvaststin by Dr Malachia Trout . Risuvastatin can take you from pre-diabetic to diabetic. It can also raise your blood glucose. I was informed of neither. She also took me off metformun during the same time frame .

@kbirchem, I think the answer to how Mayo Clinic treats peripheral neuropathy depends on your specific diagnosis and your symptoms. Gabapentin and Lyrica are probably the main ones prescribed for neuropathic pain from PN. You might want to read through the following discussion to learn what other members have shared helps their neuropathy symptoms - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

I'm not sure if you have seen these sites but you might find them helpful:
-- Foundation for Peripheral Neuropathy - Complementary Therapies: https://www.foundationforpn.org/living-well/complementary-therapies/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

Have you looked into any complementary or integrative therapies to see if they might help your peripheral neuropathy?

Spoke with my neuro surgeon today about the neuropathic pain flares that I have after each Moderna shot (had the 3th one on November 16 and it's still ongoing- the last one was for 5 weeks) and he says it's very likely that they are triggered by the vaccine, more specifically by the lipid nanoparticles that carry the message to the immune system (also present in Pfizer vaccines). He has more patients with almost identical symptoms and advised to post them on a website where you can talk about serious side effects. According to him, this is the only way for pharmaceutical companies to know about this and to act accordingly. I hope it's possible that they can tweak their vaccines a bit, so we don't have to be scared of the next booster anymore. And I think we still have a few of them lined up in our future.

@ninette, Have you reported the vaccine side effects to the Vaccine Adverse Event Reporting System (VAERS): https://vaers.hhs.gov/. Not sure why all doctors don't know about it...

"About VAERS -- Established in 1990, the Vaccine Adverse Event Reporting System (VAERS) is a national early warning system to detect possible safety problems in U.S.-licensed vaccines. VAERS is co-managed by the Centers for Disease Control and Prevention (CDC) and the U.S. Food and Drug Administration (FDA). VAERS accepts and analyzes reports of adverse events (possible side effects) after a person has received a vaccination. Anyone can report an adverse event to VAERS. Healthcare professionals are required to report certain adverse events and vaccine manufacturers are required to report all adverse events that come to their attention.

VAERS is a passive reporting system, meaning it relies on individuals to send in reports of their experiences to CDC and FDA. VAERS is not designed to determine if a vaccine caused a health problem, but is especially useful for detecting unusual or unexpected patterns of adverse event reporting that might indicate a possible safety problem with a vaccine. This way, VAERS can provide CDC and FDA with valuable information that additional work and evaluation is necessary to further assess a possible safety concern."

Hi John, I live in Belgium and have reported it to a Belgian institution. Do you think it makes sense to also mention it at VAERS?

Hi Ninette, So sorry about not remembering that you lived in Belgium. You asked a very good question. The information under the VAERS Frequently Asked Questions says anyone can report -- "VAERS accepts reports from anyone. Patients, parents, caregivers and healthcare providers (HCP) are encouraged to report adverse events after vaccination to VAERS even if it is not clear that the vaccine caused the adverse event. In addition, HCP are required to report certain adverse events after vaccination."

I don't think it takes long to report the adverse side effects online so it probably might help if they were gathering data from around the world. (just my opinion 🙂).

Thank you John, I filed a report. I really hope they can adapt the vaccines a bit. And for now I hope the symptoms will disappear sooner rather than later 😉