COVID vaccines and neuropathy

Do you have the you tube link?

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I preface the below my stating that this is a obviously a health forum. Comments regarding any perceived association between the COVID vaccine and PN should be (and in my case are) completely independent of any political views or influence. It's solely a public health issue.

With that as the preface, I have had SFN since 1994. It was generally mild, with periodic flareups. The first Pfizer dose caused no reaction, but exactly three weeks after the second dose, my legs started burning with intense pins and needles and a marked increase in fasciculations. It has generally gone unabated without a return to baseline for the past 11 months. Feeling permanent at this stage.

I understand that views and associations noted on in this forum - and by me as well - are purely anecdotal and not scientific. That said, I do believe that the vaccine is responsible for the marked worsening of my symptoms. I understand too that COVID itself has caused some to get PN symptoms in close proximity to contracting the virus. Anecdotal as well.

I just think it important that people have all the information they need to make informed decisions, no different than any other medical decision. I am profoundly NOT anti-vax. I get the flu shot annually and my entire family, including my three teenagers and wife, are fully vaccinated (and wife is boosted). Given my apparent reaction, however, I have (perhaps not surprisingly) elected to not get the booster at this time.

Take good care,

JayB

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Do you have the you tube link?

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Here's the specific link for the DrBeen presentation about potential treatments
https://YouTube/uuaz8CpnV71

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I am grateful to have found this group, as I have been suffering from neuropathy-like symptoms and other ailments for 9+ months after the vaccine. I am disheartened to see that so many of us are experiencing these adverse reactions and receiving little help from the medical community.

Prior to the vaccine, I was a healthy, active, 31-year-old with no prior medical conditions. I get the flu shot annually along with all other recommended vaccines and have never had an issue. I received the first dose of Moderna at the end of March 2021. A few days later, I developed an intense prickling/pins and needles feeling in my arm where I received the shot. Eventually, the pain and tingling moved into my leg and then up into my neck, face, and mouth. At this point, I consulted a doctor who recommended that I move forward with the second dose. He diagnosed me with paresthesias from the vaccine but said that it was not serious and should subside in a few weeks. He said he would report my reaction to VAERS, but did not actually do so until 9 months later when I followed up with him to ask for my case number.

I received the second dose as scheduled at the end of April 2021 and from there my symptoms exploded: burning, tingling, numbness, distorted temperature sensations on my skin, internal vibrating/buzzing, vision disturbances, sensitivity to light, and tinnitus. Around four months post-vaccine, I also developed muscle twitching/spasms all over my body (face, eyes, back, arms, legs, and in my core - almost like my organs themselves are twitching), along with ear pressure/popping. These symptoms have all persisted and migrate throughout my body.

My mother received one dose of Pfizer in April and has exactly the same paresthesia and muscle spasm symptoms (her muscle spasms also began around 4 months post-vaccine). Thankfully, we realized that the vaccine was not safe for her in time for her to refuse the second dose. Like me, she is healthy and active with no prior health concerns.

I have now seen two neurologists, an immunologist, and a rheumatologist who all concluded that these symptoms are a direct result of the vaccine. In addition, they each acknowledged that they have seen many patients like me and my mom; however, they do not know how to help us.

Over the time period of my vaccine injury, I have developed antibodies consistent with autoimmune diseases such as lupus and thyroid disease. Conditions that I did not have prior to the vaccine and do not run in my family. This vaccine has truly been life-altering for me. I am now facing a life-long illness after trusting that this vaccine was safe, had no long-term side effects, and would protect my community.

My mom and I would like to be part of a study for these types of adverse reactions. We are currently on a waitlist for a study with the NIH, but have not heard from them since the fall. Our local university research hospital declined to study our case. Could someone please direct me to current studies that we can join so that people with our reaction can receive support and eventually be screened before receiving these life-altering vaccines?

My heart truly goes out to all of you here. I hope we can find healing in this new year.

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How to report to VAERS?

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Sorry, for some reason, that link is broken. You can Google the title of the presentation "Autoimmune Disease Caused by Spike Protein and Potential Management Approaches".

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Here's the YouTube channel for Drbeen Medical Lectures
https://www.youtube.com/channel/UCrtd2wePvAl6RN_D-9jWVQQ

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Thank you for this link. It was strong information. Are you aware of any on-going studies on COVID vaccine reactions? I have registered on a website that seems to be NIH based, however it does not return any studies which match my conditions. I would like very much to be involved in any research related to this, I feel it would somehow go a little ways towards making all the fear and discomfort worthwhile. I plan to bring it up with my own neurologist at my next visit, but I have learned to have very low hopes with him. Thank you for any resources, and for the wonderful job you do with this forum.

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I had idiopathic SFN for 20+ years prior to getting vaccinated. I had no adverse reaction to the first Pfizer dose, but exactly three weeks after the second dose, an intense burning and increase in fasciculations occurred and has not abated for 11 months now. It is disturbing to read about so many people on this board having problems (and presumably many others in other forums) and yet you hear nothing about it in the media whatsoever. People deserve to have all the information in hand so that they can make informed decisions about their own health. I think it would be hard for anyone to dispute that.

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