COVID vaccines and neuropathy

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. 😟

I believe you may have microclots. A trial of aspririn 81mg and plavix would be worth doing. I also am a big believer in pentoxifylline. I had SFN from Pfizer... similar history as you.

Thanks for the heads up on plavix and pentoxifylline. I have an arterial/venal Doppler scan and consult w/ my vascular specialist next week and will mentions these.

I’ve been on daily 81mg aspirin since late 2019. I too believe this is all due to micro-clotting. There are some great recent videos confirming such on Dr. Mobeen Syed’s YouTube channel (“Dr Been”).

My fear with possible IVIg therapy (as that’s seemingly the most efficacious of the three for severe autoimmune inflammatory conditions thus far) is (1) pulmonary embolism (2) stroke and (3) thrombosis. All of these including aseptic meningitis are listed as severe side effects of that therapy. Who needs more (and bigger) clots? …especially at the cost of that treatment.

You mention you “had” SFN after Pfizer. Did that go into remission? If so, how long did it take?

Maybe you have a stronger immune system that triggered a stronger response. With covid itself, there were cases of people over 90 surviving with few complications and one theory was that their body was able to throw off the virus as the danger for many is the cytokine storm response wherein a strong immune system can be triggered to over-react and fight itself.

I have chemo induced neuropathy and was told most improvement occurs in the first year. It's in my feet and less severe in my fingers. I've had 3 Pfizer shots with mild reactions lasting no more than a day and a half. My neuropathy did not change after the shots. For the poster who wrote of the 15% reported/85% unreported symptoms, that needs to be put into perspective. The figures are meaningless without actual numbers attached. Ex. Did 15,000 people report symptoms translating to 85,000 unreported for a total of 100,000 with issues (just picking out imaginary numbers here). Over 208,231,968 people have been vaccinated in the United States leaving 208,131,968 people without adverse neuropathic issues. (Again, I know nothing about actual figures reported, mine are just for illustration, the vaccination numbers are real). As to attributing symptoms to a single incident, that can be shaky as well. I also have moderate osteoarthritis in my knees and had an incident last summer that caused severe pain for months. By November my knees were so bad I had issues getting up and down from chairs (the toilet was the worst) and had to use the railing to haul myself up and down stairs with a great deal of pain. Three things happened in the weeks prior, flu shot, covid shot, prolia shot, plus I was on Anastrozole. I picked out Anastrazole as the focus and my oncologist allowed me to switch to Letrozole at half dose. That seemed to work, but I also began collagen supplements. My knees are almost back to normal (still arthritic). Next week I'm due for next Prolia shot. I think this will settle one way or another the cause of the severe joint pain as I believe I've ruled out everythingbut the Anastrozole. So, while some can determine what caused the symptoms, many are just guessing as I was.

I wrote that the Wall Street Journal cited pharmaceutical
industry estimates that only approximately 15% of the people who suffer adverse effects from drugs report them on the FDA's FAERS website. The obverse would of course be that approximately 85% who have adverse effects do not report them. With a drug that 100,000 people suffered adverse effects from, an estimated 85,000 then would not report that adverse effect on the FAERS website designed to alert consumers of such reports. I don't know how to put that into perspective other than to cite the industry-accepted percentages quoted to the Wall Street Journal.

To me, the inference is that the vast majority of adverse effects are not reported where the public can see them. That's a particular problem with new drugs with no long-term safety or efficacy studies even available for a diligent patient to even ferret out with determined due diligence.

And then there's a covid 'vaccine' exceptional circumstances wherein people were pressured to take a drug for which there was essentially zero information and serious enquiries into it, by many highly-respectected scientists and researchers, including the inventor of the PCR test who cautioned the government that the test was being used inappropriately for covid testing, were suppressed. And Pfizer wanted 75 years to document the reported adverse effects. At least with most drugs, people can check out reported side effects before taking them.

“As to attributing symptoms to a single incident, that can be shaky as well.”

All I know is this: Before April 24th, 2021 (the day of my second Moderna shot) I had no symptoms of anything health-related, Covid, prediabetes or otherwise.

Two days later I had burning sensations in my lower left leg. By the first week of May my left foot went numb and I lost hair on my legs. By mid-May I had carpal tunnel and pulsing sensations up my forearms. By end May, orthostatic hypotension and constipation. By June, cubital tunnel. By August my right foot went numb. By my 42nd birthday in October, tinnitus and visual acuity decline. By December, eye cotton wool spot. By January, erectile dysfunction. By February Raynauds/cyanosis. My Apple Watch has been notifying me of atrial fibrillation for the last month…

I have had Covid PCR tests weekly since before this started. Negative each time. Strict diet. No alcohol. Daily exercise.

There is no way on Earth that this was in any other possible regard NOT all attributed to a single event.

I’m very sorry, but I don’t care about your uncited numbers of the presumably unscathed vaccinated US population. I know what happened to me, when it all started and what started it.

There have been people (like myself) seriously and directly injured by these mRNA vaccines, and for anyone to even imply otherwise is honestly rather insulting.

3 days after receiving my first Moderna vaccine, I developed nerve problems in my calfs & feet, which I believe to be a form of Neuropathy. It started out with a burning sensation in my calf and then started tingling continuously. After a week or so, it started to go away, but has returned several times since over the past year and now has gotten worse. It feels likes it is travelling throughout my body at times, where all my nerves are tingling, which is very uncomfortable. What can I do for it? I have talked with 4 other people who have had similar reactions to the Moderna vaccine, and I'm wondering who else has had this problem & what are they doing about it? Thank you