COVID vaccines and neuropathy

I have it bad but went ahead with my Covid booster jabs. I don't see a connection. If there was a lot would have been said in the media by now...

I am looking for a doctor that can help my daughter she also was in perfect health and developed neuropathy and other reactions to moderna. It’s been 6 month of going to one specialist after another.
Looking for a doctor that is focusing on this-
Need help

Ellen -
It’s really hard to argue with what you’re saying. Having idiopathic neuropathy for 6 years, over that time, I’ve had ideas I’ve thrown out at my doctors for things to test because I “felt” there could be a correlation worth checking (uti at exact time of my sudden crippling neuropathy, lower back pain ever since, working at a (now) US EPA Superfund Site for mercury contamination for 13 years, a cancer I was later discovered to have etc etc) Most suggestions I had were dismissed right off the tops of their heads without data or even making their visit notes, telling me it was all coincidental while not being able to offer cause ideas of their own. It’s been frustrating. I am very happy to report that I never had a change in my neuropathy after the vaccines and boosters, nor have I had Covid. (And of course my happy news of that doesn’t go into VAERS)
You’re right, VAERS only captures adverse reactions people think they MAY have had, and isn’t in the same database as total population that received it, so scientists could never use that data alone as statistical evidence. However, I’m a firm believer of “where there’s smoke there’s often a fire”. I do not have data, but I have to believe a whole lot of people started getting sick (and dying) in different parts of the world with something unusual with very similar symptoms (not identical) for a bit of time before somehow enough data reached a high enough level of authority to make someone realize there was Covid going on out here. The system of collecting that “data” to realize something big was (and had been) going on wasn’t VAERS of course, and I’m sure the first of the many people going to doctors and getting sick (and the families of those who died) were frustrated as heck to not have a clue of what the illness was early on and how to treat it, and how to stop spreading it . Many probably felt dismissed by their doctors. Now look at how long they searched backward (and may be still searching) for “Patient Zero”. Most of us with idiopathic disease feel the same way) But somehow enough “events” surfaced to put the world on notice that something terrible was going on and all hands on deck were needed to help understand this terrible Covid thing and to help stop it.
So I personally see the benefit of VAERS - it’s a collection of unproven ideas, but at least it’s a system! I don’t know how many people get sick or die eating salmonella on their sprouts before companies issue a product recall, but I doubt it’s not from an organized database. I’m hoping that with VAERS, even if filled with some biased and tainted reporting, that educated scientists see enough smoke at times to determine there might be a fire; then of course they’d use proper data collection and statistical analysis to see if major research should be allocated to testing the theory and solve if it’s warranted. So I’m just suggesting that any database is good and I’m trusting that the educated know how to use it.
Many of us with idiopathic PN probably wish there was a formal system of collecting our ideas so maybe enough smoke can be seen to put tons of resources on it to put out our fires.
Debbie (drying out in the Carolina’s)

The doctors are still trying to figure it out. I am sorry can't help with your daughter. I will post if they change for me

Thank you, Debbie. In my own year-long quest for a diagnosis of what turned out to be "likely clinically isolated demyelination syndrome" I went down many rabbit holes of this type, including B6 toxicity. I'd had two doses of Shingrix several months before onset. Not knowing what I had made it easy to make wild guesses at causation. I finally got a diagnosis but of course causation was still an open question. In the past year, two very strong papers have come out suggestion that MS (and CIDS) are auto-immune reactions to re-activated Epstein-Barr. But most neurological conditions have no known cause other than genetics.

I have to disagree with you about "any database is good." The educated know that a database like VAERS is "GIGO" - garbage in, garbage out. A good database is one that is designed to answer a specific question and the manner of data collection is critically important.

There is no indication that SARS-CoV-2 started in multiple places in the world. The World Health Organization has a reporting system. There was a rapid outbreak in China, centered in Wuhan. The WHO was alerted on 12/31/19. https://www.cdc.gov/museum/timeline/covid19.html

Kind of like weather forecasting, you take what data you have, experience, make all these models, and still hard to predict! But sometimes they get it right, and for many of us it’s not close enough.
Sorry to hear what you’ve been going through. I will say that the Shingrex vaccine is the worst I’ve ever had in my life! But not the cause of my neuropathy, since I already had that. But the shingles I had 6 months before my Shingrex vaccine was a lot lot worse.
As for this site, we read of those who think the Covid vaccine is the cause of their neuropathy. I know people who reported it’s caused their hair loss, heart palpitations, eczema, GI issues, and blurred vision. So the VAERS reports on what this vaccine is thought to have caused have to be all over the map and certainly no way of knowing true cause of people’s reported conditions. I wouldn’t want to be the one employed to decipher it. You are obviously well informed, and I do rely on WHO and CDC on providing information that they’re resourced better than we are to inform, but how do you propose that real, statistically correct data is collected and folks can contribute? Quite the conundrum…

We rely on trained epidemiologists. And adequate funding for the research and analysis.

Awhile back I read an article about a study done on neuropathy caused by the covid vaccine. I'm sorry I cannot locate it to share, but it basically found that the vaccine could cause neuropthy in a small percentage of cases, but the covid infection caused it in a much larger percentage. The conclusion seemed to be that the risk of neuropathy is much great with an infection. I am providing a link to a somewhat similar article which is a bit more technical but pretty much tells the same story.
https://pubmed.ncbi.nlm.nih.gov/35233819/

Sadly, this is the reaction by, not only those who have not experienced an adverse reaction to the Covid specific vaccines, but the medical community, governments and the media. Those of us who had never had any adverse reactions to any other vaccines, who were healthy and well prior to the Covid vaccine, and who experienced devastating and long-term injury immediately after the vaccine, know full well the cause. Many of us have spent months or years trying to find 1. Doctors who will believe us. 2. Testing that shows something. SFN seems to be one of the few definitive diagnosis’ amidst the cascade of other ‘typical’ symptoms following Covid vaccination (for those unlucky enough to have an adverse reaction) which also mimics long-covid. Future study (should it take place) may find that those of us so affected are particularly sensitive to the spike protein itself, as opposed to any other ingredient in the vaccine. But until those of us vaccine-injured are taken seriously, there will never be an answer. My personal cascade of symptoms happened within 15 minutes and progressed over the next few days - tremors, facial numbness, brain-fog, cranial pressure, heart pain, lung pain, paresthesia, tinnitus, insomnia, and ultimately neuropathy. 17months on I still suffer from tinnitus, paresthesia and neuropathy. I am still trying to get medical assistance. I am still met with skepticism. Those of us who rolled up our sleeves to do the right thing are, by that very act, demonstrably not anti-vax. We played our part to protect ourselves, our loved ones, and strangers on the street. Yes, adverse reactions are rare, but all we wanted is for those entities who encouraged us to get jabbed to say, “if you’ve had a problem, we’ve got your back.”

The Pfizer and Moderna vaccines do not contain the spike protein. It contains mRNA (messenger RNA) that make antibodies to the spike protein, should that protein (i.e., the COVID virus) enter your body.

If you were exposed to the spike protein, it was because you contracted COVID.

That you were affected within 15 min is unusual but it couldn't have been due to exposure to the spike protein because the Prizer and Moderna vaccines do not contain the spike protein.

The J&J vaccine is basically a modified adenovirus that carries instructions to your cells to make the spike protein, to provoke your immune system to create antibodies. Did you have the J&J vaccine?