COVID vaccines and neuropathy

On the Neuro V Long-Haulers Facebook group, some are reporting that the initial EMG after the Covid vaccine was normal, but subsequent EMGs became abnormal, indicating large fiber nerve damage. Similarly, the initial test for ANA autoantibodies is normal but becomes abnormal over time. In many cases, the nerve damage is autoimmune-mediated and autoimmune reactions develop over time. Large fiber nerve damage can cause leg weakness. My tests became abnormal about 7 months after the first Pfizer vaccine, even though my neurological symptoms began within 2 weeks of the vaccine.

You mentioned something I hadn't heard until recently. A model I know is now in very bad shape as she had a lot of cosmetic fillers in the past and, when she got covid despite taking all precautions, her immune system started attacking the fillers. They are HA-based but apparently her body doesn't recognize them now. Her face is so severely swollen that she can't see to drive and the many cosmetic surgeons and dermatologists she's consulted say they have no solution. Were these recent fillers, there are a few ways to help dissolve them, but they were done when higher doses, or a different HA, were used so that's not an option. Nor is surgery as these aren't discreet lumps but have incorporated into other adjacent live, healthy tissue that would have to be excised as well. And she's in a lot of pain of course. I'm guessing that this was from a cytokine storm, albeit milder than covid can trigger. But it's been 10 months since the covid mRNA injection and the condition hasn't waned.

We can only hope that all of this stuff improves with greater time since last mRNA not-exactly-a-vaccine.

And maybe get an enforceable world referendum on gain-of-function virus games.

That is so so sad. I was afraid there would be worse cases than the several mentioned, since HA is also natural. They are using a heart medication ( scary) that seems to immediately reverse the lip etc inflammation. And also there is something that dissolves the HA injected ( equally scary). I will see if I saved the notes on this. I know there's a you tube video too. So sad for your friend. There are several pictures ( lips) on line too. I know. It seems to me that the Moderna vaccine thinks something in my body is the enemy. My brother had the exact same back pain, but found he had a herniated disk. So he had sergery. Still lots of problems which is ow blamed on the sergery. DA! I'll note any references I've found for you. Think most can be found by " Hyaluronic Acid vaccine reactions". Good luck....
I'm not a doctor or scientist..... But seems the vaccine might be breaking hi weight HA ( something that calms inflammation) into smaller low weight HA ( something that causes inflammation)
Think Lisinopril is the medication that is helping.
I'm not techy ... So try " Oral angiotensin-converting enzyme inhibitors....... At National Library of Medicine.
4 cases with pictures.
Sorry. Keep trying! T

@tami, @callalloo
I found this from the NIH.. concerning COVID and some neuropathies... There is not very definitive data collection out there..
"Recommendations addressing safety and efficacy of vaccination in patients with inflammatory neuropathies were formulated. No data are currently available on the safety and efficacy of COVID-19 vaccines in patients with inflammatory neuropathies or other immune-mediated conditions. There is only sparse data on the safety of previous available vaccines in patients with inflammatory neuropathies, but studies on other autoimmune disorders indicate that these are safe and mostly efficacious. Patients with inflammatory neuropathies might be at increased risk for severe illness from COVID-19.
Interpretation: Patients with inflammatory neuropathies should be encouraged to adhere to the vaccination campaign for COVID-19. These recommendations provide guidance on the management of vaccinations for COVID-19 in patients with inflammatory neuropathies. More research is needed regarding the safety and efficacy of vaccination in patients with inflammatory neuropathies and other immune conditions."

I think that much of covid mRNA post-vax stuff is only going to be acknowledged when anecdotal evidence reaches critical mass and people refuse to be placated with no answers. I fear though that the creators of this not-exactly-a-vax also cannot explain what it's triggering or how to treat or cure it. Maybe some of these adverse effects are from sub-clinical cytokine reactions and the immune system can, over time, calm down. I surely hope so as it's a nightmare to not be able to even get a diagnosis, or, worse, be dismissed as if there can't be any real answer.

Thanks, I'll look up your suggestions and pass them on. She's desperate to recover her former, unswollen face and be out of pain. It's scary her consulting doctors can't fix this as they've never seen it before covid vax cases. Now they're seeing quite a bit of it...

Thanks for pointing that out, it explains a lot.

I assume people with some form of neuropathy that received the Pfizer or Moderna shots and didn't have any adverse reaction don't research it and post here. I'm wondering what percentage of people with neuropathy actually get worse after the shots. Is it a statistically small group with the people who are affected being over represented in the postings? I don't doubt some people are affected to varying degrees, but it is hard to make a educated decision on the vaccines without that information.

Hi @krn, I have small fiber peripheral neuropathy and have had both Pfizer vaccines and the first booster with no side effects other than the normal ones that have been reported. It hasn't made my neuropathy worse. I do believe neuropathy is far more common after Covid infection than after vaccine. I've also had COVID after having the vaccines and the booster and it was a really mild case which I'm guessing may have something to do with having the vaccines and booster.

@sueinmn posted earlier in this discussion with some statistics which I believe were from the VAERS database - https://connect.mayoclinic.org/comment/628952/

The Wall Street Journal, a few years back, cited the best-guess statistics for how many people who have 'adverse effects' from drugs actually report them on FAERS as 15%. FAERS is the sister site to VAERS, that collects reports on drugs while VAERS is the site for reporting on adverse effects of vaccinations.

If accurate, that means that 85% of the people who experienced adverse effects (which they thought were) caused by a drug (after it was approved by the FDA), did NOT report the adverse effect on FAERS. Doctors may be least likely to because of time or inconvenience. And pharma blow-back if identified. According to the same article.

I wish people would use FAERS as it's one of the few resources for reporting these events. You can discount affects like headaches or sniffles which may have myriad causes but note odd, rare conditions ( e.g., osteonecrosis of the jaw with bisphosphonates) that are being reported by many people, just using common sense. But many times the first hint of a bad drug is some class-action lawsuit. And those are getting increasingly harder to pursue as doctors in many states (including Florida) are increasingly self-insuring with fairly insignificant funds in escrow. And personal assets in a family member's name. So pure-contingency lawyers cannot afford to sue them without the lure of an insurer's deep pockets.

I'm not defending the eggregious lawsuits, but, for many badly-injured people, contingency lawyers have been their only hope for financing a life thrown off course.

And we're losing access to valuable information when politics and/or big money (oxymoron alert!) intrude on the data-flow.

I promise to drop the subject now, lol, but just hope peoples' drug research includes a glance at FAERS as it can help someone head off a nasty surprise (e.g., again osteonecrosis of the jaw, yikes).