COVID vaccines and 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.

Did your neurosurgeon say if the J&J booster would be a good option? The J&J vaccine is not an mRNA vaccine. Does it also contain lipid nanoparticles?

He didn't mention it. From now on in Belgium all boosters will be Moderna- half the regular dose. And of course they gave me a full dose- UGH.

Sorry that you have been so adversely affected when you are just trying to protect yourself from the virus! I just checked and in the U.S. the Moderna booster is also half the original dose. I did not know that. Sorry that your authorities changed their minds after you received the booster!

@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."

@johnbishop i think your advice is spot on. I know my neuropathy has a mind of its own, but felt I had worse feelings after my first 2 shots (they subsided) I had no problem at all with my booster. I talked to my neurologist about reporting it through VAERS and he advised against it - told me we couldn’t “prove” it. In hindsight I’m disappointed that I didn’t report it. How else are they going to learn if they don’t start seeing trends in some sort of database that doesn’t exist with any single doctor? Not just for vaccines, but for a lot of medical mysteries most of us are dealing with? In the end, with the vaccine, I can so far I feel safer having had it, assuming I’m past any adverse reaction I may have had.

Did your neurosurgeon say if the J&J booster would be a good option? The J&J vaccine is not an mRNA vaccine. Does it also contain lipid nanoparticles?

This happened to me too. I developed neuropathy 2 yrs ago after taking Levaquin. It improved after about a year and I was no longer on any medication for it. Other than occasional mild flares if I overexerted, it was a non-issue. I got the first Moderna shot Jan 5 and within 6 hrs my feet started to burn. Within 8 hrs it was nearly my entire body and it did not go away. I saw my PCP and said although neuropathy isn't an expected reaction to the vaccine there are too many unknowns to know. She wouldn't advise on the 2nd dose because there are too many unknowns. I ended up not getting the 2nd dose. Unfortunately I still have the neuropathy all over. I've searched my brain to find another variable to blame, but there just isn't one that I can see. I'm now back on gabapentin 3x a day. I did report this through the vaers system. I hope in time things calm and it's not permanent. Every individual is unique and rare doesn't mean impossible, which medical providers often forget. In no way do I want to sway anyone from the vaccine. We all have to choose based on our own health history, risks, etc. My family and friends who received it had no problems. But I did want to share my experience.