Anyone had a problem with neuropathy after receiving the vaccine?

@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).

From what I’ve read there’s a lot of overlap in symptoms reported for long Covid and adverse reactions from these vaccines. My hope the same can be said for treatments…

My story: I started having acute onset peripheral neuropathy in my left foot and lower leg right after Moderna shot #2, but not fast enough for Guillain-Barre. Within two months it moved to my hands and my right foot. Then came severe orthostatic hypotension. I had ZERO neuropathy symptoms of any sort before my second shot. My left shin had burning and buzzing starting two days after…then I lost hair along my lower legs within a week that my left foot went numb…

Sadly most of my issues have only been distal so I can’t classify as CIDP either. I am pre-diabetic w/ a constant 5.7 A1c as of 2019 (ironically right before Covid hit us), and yet many of these symptoms also overlap with *long-term uncontrolled* diabetes.

I’ve seen so many doctors and had so many blood tests, scans and EMGs in the last year… all of them except for my skin biopsy came back “unremarkable/unrevealing.” So far all but just one doctor (my second/current neurologist) I’ve seen just dismisses this as “diabetes.” When I ask if this onset and timeliness with Moderna shot #2 is also characteristic with diabetes, they shrug and say “no.”

My feet were getting worse until I started have tinnitus in my left ear. I took a Medrol dosepak (methylprednisolone) and my foot drop and severe numbness dissipated somewhat. No joy on my ear, but it worked a bit for my feet. Sadly after taking the steroid I got a cotton wool spot in my left eye. Then my leg and forearm muscles began atrophying FAST…

I’m now have tinnitus in my right ear too and…sigh.. severe erectile dysfunction. I’m also noticing cyanosis in my feet when sitting during the day(possible thrombosis?)

My only doctor who believes me is thankfully my neurologist. He had originally suggested that the vaccine inflammatory reaction exacerbates latent existing inflammatory conditions. He had also suggested pulse steroid therapy back in Feb, but wanted me to wait until May so see if things would wane. They haven’t…

All of these symptoms…neuro, vascular, seems related to blood clotting and occlusive issues resulting from defective immune responses. Corticosteroids, plasmapheresis and IVIg treat autoimmune conditions, yet on all these forums online…none of the three are mentioned much.

From from what I’ve read, corticosteroids have had more limited success compared to IVIg and (to some extent) plasmapheresis in treating long Covid neuro conditions.

My neurologist readily admits that the onset of all this crap is too fast and corresponds too much to my vaccine administration. He had stated multiple other patients have come to him (healthier than myself) with similar symptoms.

I have had weekly Covid PCR tests required from my daughter’s school for over a year. Each week…”Negative.”

A year out from this “safe and effective” vaccine and I have been left with minimal sensation in my fingers and feet, cold/blue/numb feet during the day and warm/red/burning feet in the evening, ringing in my ears, dark spots in my vision….and I can’t be intimate with my wife anymore. None of this was present before these jabs.

I have spent a year cursing the days I ever exposed my left arm for these injections. Now I am laser focused on treatment. Has anyone received steroid, IVIg and/or plasmapheresis/apheresis treatment on here? Has it proved helpful?

Thanks in advance and I hope this all gets better for us soon. Without medical/media acknowledgement I fear we will never get the care we deserve..

P.S.: Sorry for the TL;DR, but I’ve got no where else I can vent this. It has been very frustrating, exhausting and debilitating.

Hi, I am new to this but very encouraged there is a safe space to share about these concerns...I am 55 and I had multiple migraines out of character the same day of my 2nd phizer. In sept . Then I suddenly got 6th nerve palsey 21 days later. It slowely improved in Dec after 3 months of severe double vision. My tinnitus also got really bad and while my eye was starting to move again I noticed I was having ongoing muscle twitches- day and night- all over. And then suddenly one day I woke to my toes feeling really numb-. Real sudden- like over night. Just like the palsey in my eye. I already have 3 auto immune diseases...Hashimoto's thyroiditis at age 13, type 1 diabetes at age 12 and necrobiosislipidicadiabeticorum at age 29. No complications of any kind having had diabetes all 45 years. Most everyone is medically assuming it's the DIABETES and just suck it upI

Today I had a nerve conduct test that indicated my feet numbness is so severe , It is sensory motor polyneuropathy . I am so overwhelmed not knowing the cause based on the sudden onset like my eye. This neurogist suspects it's autoimmune related - triggered by the vaccines. It must be, because after I got the 3rd (novavax ) booster in march ( not the same as the mnra vaccines) my feet were intensely burning same day with 2 severe migraines in a row again.

I am totally open to anyone's thoughts👍 this forum is giving me comfort I am not alone with this new diagnosis.

I heard physer is now acknowledging bells palsey and 6th nerve as rare side effects.

WHY does this insight have to be so hard to find while everyone is being pressured to get the vac REGARDLESS of any medical history. It is really troubling. 😟