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← Return to COVID vaccines and neuropathy
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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.
Replies to "I am grateful to have found this group, as I have been suffering from neuropathy-like symptoms..."
I have had a marked increase in symptoms of neuropathy over past year after taking three Moderna shots. I had not connected the Moderna shots to the increased symptoms of neuropathy, which have grown markedly worse
My symptoms are almost the exact same including the symptoms similar to lupus and thyroid issues. No issues like this at all before.
I feel your anguish. I too have had a lot of the same after my Moderna vaccines last March and April. I too was an active healthy person, and yes, this has been life altering for me. I’m not sure where you are from, but where I live, only 51% of the population in our county has been vaccinated. I saw a neurologist 4 times and he refused to even consider that this was related to the vaccine or having Covid prior. Medicate for restless leg, then carpal tunnel as the inflammation spread to my wrists and elbows. I don’t think he saw many cases related, as the population of vaccinated is so small where I live. I did go onto the Moderna website and reported the side effects myself, as there was no chance this doctor was going to report anything. I’ve since gone back to my primary care nurse practitioner who is much more supportive and I feel more heard. I do realize there is nothing that can be done, no cure. Just try to manage as best as possible. So that’s my new goal for 2022. Get out of bed each morning and try to be positive. Stretch, go for a walk, eat healthy and be the best I can be and manage the pain and numbness with things I have found that help. CBD gummies at bedtime and foot cream with menthol and peppermint to help with the burning. It helps to know this isn’t all in my head and that others are dealing with the same. Glad to have found this group as well.
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.
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@erin2288 I’m so sorry to read your story and know that you’re going through it. It sounds almost identical to my own, except for our age difference. If it helps at all to know you aren’t alone, you aren’t. Traditional medicine unfortunately seems to be of little help right now. As more and more information comes forward, they will have to figure out what to do with us! I have been extremely frustrated with my own neurologist as he’s not able to offer me much real help and tends to be placating. I will only credit him with never having denied that my symptoms are probably vaccine related. I don’t know of any studies we could participate in but I would also love to do so. I return to my neuro in a few weeks and I have some hard line questions for him. I’ll also ask him if he’s aware of any studies being conducted. He practices in a large academic medical center but has never indicated to me that he’s had any other patients like me, whereas I hear other people saying that their docs are seeing a lot of it. This whole topic has become so politicized, it’s very hard to know where the real truth lies. This group is great. Best wishes.