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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@gailmarie123

Hi, Thank you, I apologize if this has been asked before—I’m not sure how to navigate this site.
Twenty-eight years ago I had symptoms of MS which included extreme fatigue, paresthesias running down my spine to my feet whenever I bent my neck towards my chest balance issues, and very painful neuropathy in the thumb, index finger and middle finger of my right hand. MRI only showed two plaques on right C-Spine, but I was told there needed to be three plaques for a definite diagnosis. Within about a year symptoms gradually disappeared other than some lingering coordination issues that cleared up within a couple years.
Fast forward to March of this year— I had my second Covid vaccine. Two weeks later I developed neuropathy in both feet and my hands.More so in my feet. MRI shows another plaque on my left C—Spine. EMG on my legs shows nerve damage in a nerve running along my right tibia. Nothing showed in my arms or left leg,
My neurologist said he believes it’s the way my immune system reacted to the Covid vaccine and not a side effect of the vaccine itself.
At my last appointment the doctor ordered some type of antibody tests which came back normal. I’m not even sure what they were supposed to rule out or diagnose. Would you know?
He put me on Gabepetine but it caused my ankles to swell and I had blood in my urine twice and was put on antibiotics proactively as a UTI was suspected but nothing grew when cultured. I think the blood had something to do with Gabepentine.
My doctor switched me to a low dose of Cymbalta at night which is when I have the most issues with my feet.
So, my question is—is there any evidence that the Covid vaccine can cause neuropathy? I honestly am a bit afraid it could be MS, is it just a coincidence that symptoms started after second vaccine?
Sorry, I know this is long. My doctor didn’t notify me of the lab results, I got an email that I had test results available and logged into my chart to get them. My doctor didn’t have me schedule a follow up. Do you think I should get a second opinion? Do I just live with this? I’m hoping it will disappear like it did 28 years ago.

Thank you for listening. I look forward to hearing from you

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Replies to "Hi, Thank you, I apologize if this has been asked before—I’m not sure how to navigate..."

@gailmarie123, I don't really know why your doctor ordered an antibody test but that would be an easy question for him to answer for you. Do you have a patient portal where you can send your doctor or care team a message? If you do, I would just send him a message and ask him. Otherwise I would just call his office and ask or leave a message to have him call you back.

Other members have shared experiences likes yours with the COVID vaccine in the following discussion that you might find helpful -- COVID vaccines and neuropathy: https://connect.mayoclinic.org/discussion/covid-vaccines-and-neuropathy/

Other than a side effect of the COVID vaccine, there can be many other causes of neuropathy including damaged or compressed nerves in the spine or other locations. You mentioned you are hoping it will disappear like it did 28 years ago. Do you mean you had neuropathy symptoms 28 years ago and they disappeared?