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COVID vaccines and neuropathy
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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My PCP has a Quest Lab and Technician in their office. The PCP has offered to order an arsenic level test on me because my derma tologist suggested that a rather rare form on pre-skin cancer that I had removed several years ago could have been from arsenic exposure. Go figure? I looked at the reports of arsenic in my water, but didn't know what to do with that information. It wax below whatever authority says it's safe nationally, but above what would be safe in Califormia (what would be?). Anyway. I think I read somewhere that arsenic levels can also contribute to neuropathy. One of the many rabbit holes I've gone down.
I guess I'll ask for the two tests y'all suggested and the arsenic one and go from there.
Thanks for all the responses! Y'all have been more than helpful and welcoming.
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1 ReactionI didn't mean a home test. Of course it's preferable if her doctor orders these tests for her but if he won't, she can schedule and pay for them herself at her nearest Quest lab and go get it done. Easy, fast and reliable. No test kit through the mail.
That's great! Hope he will be willing to do the CRP and Sed Rate tests for you also. Both are ideal at detecting inflammation. Hope you will post how it goes.
I was fortunate that my PCP and rheumatologist both took me seriously. And I'm not the only patient they've seen with similar reactions. But they seem to be the exception to the rule. You are 100% correct that we are among a small percentage of people who had a serious but non-life threatening reaction. But that doesn't give providers the right to not take people seriously and dismiss the possibility that the vaccine could be responsible for their issues. My daughter has had tachycardia for 4 months after one shot of Pfizer. Her PCP told her it was anxiety and to see a psychiatrist! It was so bad she ended up seeing a cardiologist who confirmed the tachycardia and prescribed medication to slow her heart down. But even he refused to admit the possibility that the vaccine was responsible, even though post-vaccination heart issues have been widely reported It just astounds me.
How is your neuropathy now? Has it lessened at all? Hope you have found something that helps you.
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3 ReactionsIt is at least affirming to have recognition of the negative effect the vaccine has had on many. I’ve always advocated for being vaccinated, but although a booster is highly recommended for us transplant folks I will definitely not be getting one.
My neuropathy spiked to new highs after both vaccine shots. It’s fairly stable now, but I definitely have good and bad days since the underlying cause is Sjogren’s. I think sticking to walking a couple miles each day, no sugar, white flour, and low carb is helping.
I’m glad your daughter is doing better. How are you?
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2 ReactionsYes, my mother, uncle, grandmother, and sister have all been diagnosed with peripheral neuropathy. I experienced symptoms for the first time with my second Pfizer dose. They started about 12 hours after receiving the dose, were strong for the next 12 hours, and faded away over the following 24hrs. I experienced sharp pains through my arms and legs like someone was lightly stabbing me or running thin needles into my arms and legs. I also had twitching in my legs, which I do experience periodically anyway. I’m not a doctor, but I did advise my family with PN to perhaps skip the second dose. I sent a note to Pfizer, but it is not in the Vaers database.
I took the first shot of Moderna on 7/27/21 and am scheduled to take my second dose tomorrow. I am filled with anxiety about getting it. When I was given the first shot, my arm immediately started to bleed and the tech slapped a bandaid on it. The bandaid had a small window in it and it immediately filled up with blood. I've never heard of anyone else bleeding except from the gal who gave me the shot. My arm was pretty sore for a few days and I sported a bruise by the injection site for about two weeks.
Over the last year, I've complained of my little toes feeling numb at times, but don't know what is causing it. I think I complained once to my nurse practitioner or doc and they thought it wasn't a big deal. I hate going to the doctor and rarely go. My only regular medication is wearing a very low dose estrogen patch and I've worn that for more than 20 years to control headaches, and level out anxiety. My little toes on each foot are kind of numb right now and often are feeling that weird way at night. Not painful, just kind of numb feeling.
The only new thing I guess I've noticed since the first shot is occasionally feeling like my lower calf is tight or swollen, but nothing is visibly wrong. I've also had some occasional heartburn. I believe in immunizations, but I've read about so many people having pain after the 2nd shot, particularly with neuropathy, like Eric Clapton, the guitarist guy! I am a musician and I can't imagine losing my fingers ability to play the keyboard, or to have pain in my hands like that, or pain anywhere like that, really.
I don't want COVID, but right now I'm thinking I'd rather take my chances on getting over Covid than living with some kind of pain for months or forever because of taking some shot. I am a supposedly pretty healthy 67 year old woman, and take total control of myself, but I do live alone and have no one to care for me if I get down. This insanity of the unknown side effects of the vaccine is about to drive me nuts. I think I'll call my doctor and have him run blood tests on me to see if any of my labs have changed since I took the first shot.
I'm so glad to hear your neuropathy is fairly stable at this point. My symptoms have been going on for 4 months. A couple of things have improved but the rest is still ongoing, I've made similar diet modifications like yours, taking vitamin supplements and fish oil. I like to walk too and I try to do it most evenings. I want to add more exercise but I always seem to find something else to do instead, lol.
I'm pro-vaccine too and wish I had been able to get the second shot. And after what you went through I totally understand your decision not to get the booster.
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1 ReactionHello @klmn, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. The unknown can be pretty scary at times. Are you able to discuss your concerns with your doctor before you get the second vaccine?
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3 ReactionsI had Moderna and did fine. Call your PCP.
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