COVID vaccines and neuropathy

That's great you are being evaluated at Northwestern. Please share the guidance they provide. There is an outstanding doctor there who is researching long Covid. The vaccine injuries resemble long COVID. Both are likely a toxic response to the spike protein. I developed sensory and motor peripheral neuropathy. My neurological symptoms began within 2 weeks of the first Pfizer vaccine. Previously, I was in excellent health.

Same thing happened to me with pheizer shot and booster intensified even worse

@cids, great point. Sharing personal experiences is permitted on the forum. You're correct, however, that anecdotal evidence is the experience or observations of one person and is not a replacement for empirical evidence. Empirical evidence consists of observations collected systematically by researchers as part of a research study.

For this reason, you will see the moderators, and increasingly members, recommending that people report their suspected side effects to the Vaccine Adverse Event Reporting System (VAERS). https://vaers.hhs.gov/ Through the collection of patient reported outcomes, researchers can study whether effects are temporal coincidences or not.

As outlined in the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/) any post that is not a personal experience and states information as fact or makes a claim that is not properly referenced may be removed. Members are encouraged to report posts that contain misinformation.

I'd advise all members to keep in mind that forums like this one where members share their personal experiences can create a biased observation. It is not to be assumed that the majority of patients taking osteoporosis medication experience side effects or that most people don't recover range of motion after a total knee replacement or that everyone gets neuropathy from vaccines. People who don't experience adverse events tend not to participate in forums because they are not looking for support and solutions.

I also hope that members who did not experience side effects from the vaccine or whose neuropathic symptoms have since resolved will return to share on the forum.

Hi. sorry to hear. I'm curious. Have you tried gabapentin? I take 600mg in the evening, sometimes 300mg during the day. It definitely helps me with the pain.

Thank you, Colleen. That is very reassuring.

I would like to point out that VAERS might have been a good idea at one time, but it has become a repository of useless data. Anyone can report anything and they do just that. In fact, anti-vaxxers are probably flooding it with false reports. The noise-to-signal ratio is such that it is virtually useless as a research tool. The reports themselves are not vetted, and, as CDC states in a prominent disclaimer, they "may include incomplete, inaccurate, coincidental and unverified information."

People may misinterpret VAERS, which is easily searchable, as a catalog of actual side effects, rather than possible or suspected ones. And it's easy to pull data out of context. "For those who are out to scare, there's a lot of material there," says Heidi Larson, director of the Vaccine Confidence Project at the London School of Hygiene & Tropical Medicine.

The other problem is that it isn't a database of all people who had X vaccine. Hundreds of millions have had any one vaccine but the only people who report to VAERS are those who think they may have had an adverse reaction. So the nmbers are basically meaningless. Say 20,000 people report what they think is an adverse reaction to the flu vaccine and (if anyone were to assess each of those reports, which they don't) it turns out that only 1300 could be medically attributed to the vaccine. The rate is not 13,00/20,000. The rate is 1300/hundreds of millions.

And no matter how many times you say it, people can't get through their heads that correlation (even if statistically significant, which it rarely is in VAERS) is not causation.

As you said, "People who don't experience adverse events tend not to participate in forums because they are not looking for support and solutions." It is just the same with VAERS.

And the fact that this forum is hosted by the Mayo Clinic may give the false impression that the information offered by an individual is somehow endorsed by a highly respected medical institution.

From the very soggy East Coast,

Ellen

Yes, 600 mg when I get up; 600 mg at 1 pm; 600 mg at 8 pm. I take 2 extra strength Tylenol when I take the Gabapentin. At the suggestion of my neurologist, I have started taking 600 mg daily of Alpha Lipoic Acid (otc). I really can’t tell that any of it helps.

So sorry to hear that will update if anything changes

Yes just started on it a lower dose and not helping much

Read your reply to so eone else Hopegou don't mind my responding but what you say about vacinnes is quite alarming. I have bad peripheral neuropathy. I had my booster and flu jab last week. I don't see an alternative since it having them carries greater risk. Weighing up the pros and cons is important I would not risk not having it

I have peripheral neuropathy very bad but I don't connect it with the Covid jab as I got the PN back in 2020. It's awful and I want to be cured of it.
There would be a lot more cases if it was connected to the Covid jab.