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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

pacer3702 | @pacer3702 | Jan 15, 2022

In reply to @pacer3702 "Here's the specific link for the DrBeen presentation about potential treatments https://YouTube/uuaz8CpnV71" + (show)

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".

saski | @saski | Jan 15, 2022

In reply to @erin2288 "I am grateful to have found this group, as I have been suffering from neuropathy-like symptoms..." + (show)

@erin2288

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.

Jump to this post

I am so so sorry to hear of your terrible experience Erin. And everyone's too. My heart goes out to all of you.
But there is something so terrifying about head, neck and throat being involved. I have sfn, it seems to have gotten into my tongue and neck, and I am utterly terrified of going ahead with the vaccination which is scheduled for tomorrow (they cancelled an appt. last year). I have been to 4 doctors to try and get sensible discussion, and I have trained as a paramedic so not uninformed. But nobody listens. So I am debating whether to risk exacerbating what seems to not be abating or risk covid. It is doing my head in. Utterly terrified. Because if my tongue worsens it could be potentially very bad.
People like us don't fit into anyone's schema for proper risk assessment so we get ignored.
You are 150% right Erin- there needs to be screening that goes beyond the basic which is for an allergic reaction. This is such a dire situation.
I hope things settle down for you. I'm sending heartfelt wishes for peace and healing.
Thank you for sharing and for speaking up.

John, Volunteer Mentor | @johnbishop | Jan 16, 2022

In reply to @total99 "How to report to VAERS?" + (show)

@total99 here is the VAERS website for reporting adverse events - https://vaers.hhs.gov/reportevent.html

John, Volunteer Mentor | @johnbishop | Jan 16, 2022

In reply to @pacer3702 "Sorry, for some reason, that link is broken. You can Google the title of the presentation..." + (show)

@pacer3702 - I think this is the YouTube video you mentioned.

lk61 | @lk61 | Jan 16, 2022

In reply to @johnbishop "Here's the YouTube channel for Drbeen Medical Lectures https://www.youtube.com/channel/UCrtd2wePvAl6RN_D-9jWVQQ" + (show)

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.

John, Volunteer Mentor | @johnbishop | Jan 16, 2022

In reply to @lk61 "Thank you for this link. It was strong information. Are you aware of any on-going studies..." + (show)

Thank you for the kind words @lk61. I did register with VAERS after I had the Pfizer vaccines and the booster but I haven't participated in any clinical trials or studies. There are some studies and information listed on the NIH site here --- Understanding COVID-19 Clinical Trials: https://covid19.nih.gov/treatments-and-vaccines/clinical-trials

I have participated in 2 different influenza vaccine studies through Mayo Clinic in the past but it's been a few years and I haven't seen any data from the studies. I did get a free flu shot so that was payment enough for me 🙂 I'm currently participating in a RSV (Respiratory Syncytial Virus) study through Mayo Clinic which is a study on how RSV affects the senior population (I think). I have my own nasal swab kit and if I'm feeling in the dumpers like I have COVID or other respiratory virus, I have a number to call before I give myself a nasal swab and they walk me through whether I should do the swab and if so, they send a messenger to pick up the test kit to determine the results.

shona | @shona | Jan 16, 2022

In reply to @cyp238ress "I had idiopathic SFN for 20+ years prior to getting vaccinated. I had no adverse reaction..." + (show)

Sounds familiar. I’ve had PN for 7 years. First Pfizer I was okay within a few weeks after second dose my flare ups are now terrible Why are these reactions to the vaccine not out there for people to see and read about before they vacc8nate ?

total99 | @total99 | Jan 16, 2022

In reply to @shona "Sounds familiar. I’ve had PN for 7 years. First Pfizer I was okay within a few..." + (show)

I am with you. I never saw any warning about neurological side effects of vaccines.

pacer3702 | @pacer3702 | Jan 16, 2022

In reply to @saski "I am so so sorry to hear of your terrible experience Erin. And everyone's too. My..." + (show)

Given the 10 months of disability I have experienced, which began 2 weeks after the first vaccine, I will not be getting the booster. One of my neurologists and my rheumatologist support that decision. I was healthy and active prior to these vaccines. I recommend that you join Neuro V Long-Haulers on Facebook. You can read about the decisions of others who faced the same dilemma. I wouldn't rush into a booster until you have time to be comfortable with your decision.