Anyone had a problem with neuropathy after receiving the vaccine?

Posted by cue @cue, Feb 15, 2021

I am 85 with small fiber neuropathy that is getting worse. My neurologist thought it would be a good idea for me to wait with the covid vaccine and not be first in line to see how it affected other people with neuropathy. Probably because it is a new technology. Has anyone had a problem with neuropathy after receiving the vaccine? If so, which vaccine?

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Profile picture for bybee @bybee

My experience with neuropathy began two weeks after I’m received my Pfizer Covid booster on 10/5/2021. From that time on I have become increasingly miserable and am so severely affected by the heat and sun that I have to take ice packs with me if I think I am going to be exposed to these triggers. I have not been helped by a neurologist, an infectious disease physician, or a pain specialist. Needless to say, this continues to not only greatly impact my quality of life, but continues to severely limit what I can do with my family and friends.

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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.

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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

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Profile picture for chaz59 @chaz59

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.

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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.

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Profile picture for pacer3702 @pacer3702

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.

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So sorry to hear that will update if anything changes

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Profile picture for chaz59 @chaz59

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.

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

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Profile picture for aquamarine4220 @aquamarine4220

I have had 2 Pfizer and 1 booster, I got Covid, was hospitalized, and have done LOTS of
research and read a lot about vaccines in general, the Moderna, all vaccines, and I will not
have another shot of any vaccine.

Foreign items, visible on microscopes found in the Moderna, sudden deaths of adults, and younger people, on and on. Long, weird cysts, looks like seaweed or little snakes. No thank you.

Great documentary called Under the Skin about vaccines going back quite a few years. Just too scary for me. I will be 80 in a couple of months, and I cannot walk or stand or get to my wheelchair on my own, anymore. So I rarely see anyone, except caregivers.

Do a lot of research before making your decision. I already had bad neuropathy, not sure if it got worse or not. Good luck.

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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

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Profile picture for dgneal13 @dgneal13

I am in the same situation. I was a healthy 54 year old. I got moderna shot on march 18 2021 with in a week started developing neuropathy and just turned into a mess. I am now at northwestern trying to figure it out. I just wonder how many other people are struggling like us

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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.

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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...

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Profile picture for dgneal13 @dgneal13

I am in the same situation. I was a healthy 54 year old. I got moderna shot on march 18 2021 with in a week started developing neuropathy and just turned into a mess. I am now at northwestern trying to figure it out. I just wonder how many other people are struggling like us

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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

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Profile picture for cids @cids

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

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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)

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