COVID vaccines and neuropathy

Do you think that the steroids had any role in you developing mast cell activation? I expect to be receiving IV steroids for my increased parasthesias and burning in the next couple weeks. I had SFN before COVID, but vaccination has ruined my life unfortunately.

Also, I am awaiting results from University of Washington for the same test as well as FGFR3. Your reading in only mildly elevated, but you might discuss with your neurologist whether that merits you trying IVIG. The HDS test is for dysautoimmunity, so an elevated result would indicate an autoimmune reaction or condition.

My whole family is vaccinated and we also get the annual flu shot, so I am decidedly NOT antii-vax. But how the hell is it that there are so many people on this site (and others) with horrible reactions to this vaccine and there is not a single mention of it in the media, by the CDC, NIH, etc.? Yesterday I had to go on reduced schedule and am only work from home, and I'm possibly on my way to permanent disability. There must be some way that we collectively can get some attention drawn to this issue. I do not want to take it lying down. I have e-mailed Fox News (which I don't watch btw), New York Times, etc. and no response. I e-mailed Dr. Anne Oaklander. I will continue e-mailing other experts (Dr. Paul Offit, Dr. Michael Osterholm) until just one person responds to me and explains how the hell so many people are being injured by this and there is not a single mention of it.

If you have ideas for getting proper attention drawn to this issue, please share it!

@mcd2021 I am sorry to hear all you and your daughter have endured post covid vaccine. Unfortunately in order to receive the vaccine one gives consent knowing the vaccines are experimental. They were approved as a health emergency. Not enough time has been allowed for anyone to learn of the long term effects. Perhaps more studies are being conducted for the covid mRNA vaccines because the vaccines use a different methodology than all previous vaccines for the other illnesses. Vaccines with mRNA have not been used on humans until now. I hope your doctors will be able to find help for relieving your symptoms soon. We all have to decide what is best. I too believe in vaccinations but at the same time I am cautious regarding what goes into my body. I don’t want additional possible health issues down the road especially when the symptoms are new to the doctors. When I am convinced it is safe for me I will get vaccinated. As they say if the shoe fits, wear it. I am waiting to learn as more data becomes available. So far I have not been given good reasons when the long term effects are not known. Mind you, as of today, according to the John Hopkins University website for covid infections and mortality, here in the United States the death rate is 1.68% of all covid infections. Meaning out of one hundred people who contract covid infection 2 will die and 98 will survive.
https://coronavirus.jhu.edu/data/mortality
Seems we have a choice to make according to our personal exposure risk. Do we risk the possible side effects of the covid infections or get the vaccination to risk possible side effects? It may be best to avoid covid infection all together if possible i.e. according to one’s own exposure risk. While the covid vaccines have shown to reduce the number of hospitalizations and deaths they do not prevent hospitalizations and deaths amongst the vaccinated individuals as per the CDC website. Unfortunately, as another Mayo member pointed out, no vaccine is 100% effective. I wish you well in finding answers to help you soon. Hang in there!

@jetsetter- I'm so glad that you posted this. We can have something show up after being vaccinated that was not caused by the vaccine, but by underlying conditions that were stimulated by your immune system. Woohoo!

My whole family is vaccinated and we also get the annual flu shot, so I am decidedly NOT antii-vax. But how the hell is it that there are so many people on this site (and others) with horrible reactions to this vaccine and there is not a single mention of it in the media, by the CDC, NIH, etc.? Yesterday I had to go on reduced schedule and am only work from home, and I'm possibly on my way to permanent disability. There must be some way that we collectively can get some attention drawn to this issue. I do not want to take it lying down. I have e-mailed Fox News (which I don't watch btw), New York Times, etc. and no response. I e-mailed Dr. Anne Oaklander. I will continue e-mailing other experts (Dr. Paul Offit, Dr. Michael Osterholm) until just one person responds to me and explains how the hell so many people are being injured by this and there is not a single mention of it.

If you have ideas for getting proper attention drawn to this issue, please share it!

Thank you for joining the discussion. You are correct, side effects like neuropathy (new or increased) are exceedingly rare after vaccine (1533 reports of all types, 435 were mild enough to result in no medical care). That shows reports of new or worse neuropathy in the range of 340/100,000 reports, or .7/100,000 people vaccinated (or .4/100,000 doses). Keep in mind that the report only means the 2 events occurred somewhere around the same time, not that the vaccine was the cause.

Compare that to reported estimates of new or worse neuropathy in the range of 5 - 10% of hospitalized Covid patients (between 120,000 and 250,000) or 350 - 700/100,000 of all Covid patients. So far 11% of the population has had confirmed Covid, about 7% of those have been hospitalized (almost 2.5 million).

If the neuropathy estimates on the low end at 5% are even close, that means over 100,000 people have new or worse neuropathy from 35,000,000 Covid infections compared to the report of 1533 from 350,000,000 doses of the vaccine in 201,000,000 people. That doesn't begin to take into account all the other risks of a Covid infection.

What we read here on Connect and in the media are reports from the minority who have bad reactions to the vaccine, not the majority of the 200,000,000 million plus who were safely and uneventfully vaccinated. Even among the 465,000 VAERS reports, over 300,000 reported events mild enough that they never sought medical care.

These are all things to keep in mind as we decide whether or not to get vaccinated. The fact that individuals have not been infected up to now does not mean they will never get Covid, unless they choose to live in a bubble for the foreseeable future. NOT my personal choice - I am vaccinated, wear a mask, and stay away from crowds. But I can safely interact with the precautions I have chosen to take.

Sue

Thought I’d share this quote from an article in Medpage Today, “Vaccine Effect or Functional Neurological Disorder? — COVID vaccination may trigger FND, much like other stressors.”

"Correlation does not imply causation," Espay told MedPage Today. "If neurological symptoms following vaccination are determined to be functional during a neurological exam, then the vaccination can only be considered a stressor or precipitant, much like any other stressor might, such as a motor vehicle accident or sleep deprivation."

I suppose that falling on the street and experiencing neuropathy closely thereafter could be called a stressor too. But accidents can’t always be avoided, whereas, vaccinations can, and certainly should be, for a medical reason. And, obviously physicians are not aware of the neurological disorders that may be due to the “stresses” the Covid vaccine have on some people. So, at least if the potential vaccine stressor was better acknowledged, maybe physicians and researchers could provide those of us impacted with guidance on diagnosis and treatment.

Here’s the link to the article: https://www.medpagetoday.com/neurology/generalneurology/94151

NEUROPATHY PAIN GONE AFTER AN INITIAL EXACERBATION!
My husband has had severe peripheral neuropathy pain in both feet for more than fifteen years with little to no relief from any medication ... In fact week prior to getting the last vaccine he consented to considering medical marijuana tincture ...10 days ago he received the third shot of Pfizer vaccine - as with first 2 vaccinations he had no side effects ...however a few hours later he began to have intense neuropathy pain - at a level greatly higher than his normal pain intensity. HOWEVER after approximately 36 hours the pain was gone and most interestingly and significantly his NEUROPATHY PAIN HAS NOT RETURNED AT ALL. It has now been almost two weeks pain free, Any insights?