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Living with Neuropathy - Welcome to the group
Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?
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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
@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?
No.
I cannot locate the original document concerning the over extension of CDC guidance on prescribing opioids. However I did find a report from the AMA discussing the same topic with pretty much the same conclusion. There are also links that may provide more information: https://www.ama-assn.org/delivering-care/opioids/time-revamp-cdc-s-problematic-2016-opioid-rx-guideline
Thank you for getting back to me.
Yes, I had neuropathy in my right hand. It afffcted my thumb, my index finger and middle finger. They were numb and tingly all the time and extremely sensitive to touch. I learned to use just my ring finger and little finger on my right hand. Although I’m right handed I used mainly my left hand.
The symptoms disappeared after about a year.
I had an abnormal spinal tap at the time and an abnormal evoked potentials test.
Unfortunately the only reports left in my chart from back then was the spinal tap and MRI results.
I just checked my chart to see what labs were ordered -it was MAG and SPG antibodies.
My doctor had posted a message for me that the tests were normal and he wants me to see one of his colleagues. His nurse has scheduled me for October 7th and I am on a waiting list to be called if something opens up sooner.
Is it unusual for neuropathy to go away?
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1 ReactionThanks for posting this. I finally managed to get through it. I guess the bottom line is cancer or no cancer everybody has a pretty good risk of these problems.
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1 Reaction@gailmarie123, I have no medical training or background but my own personal opinion on is it unusual for neuropathy to go away is it depends on the cause of the neuropathy. Some examples I've read about where it's possible for the neuropathy to be reversed or go away are when there is a nerve that is compressed or damaged causing the neuropathy and there is a treatment or surgery that can correct the damaged or compressed nerve, then it is possible for the neuropathy to go away or be reversed. Also, in cases of neuropathy induced by diabetes or alcoholism, sometimes it's possible to reverse the neuropathy if you take care of the cause.
Did your doctor ever mention anything about carpal tunnel syndrome for the symptoms in your right hand?
Hi John, 28 years ago my emg was normal. This last emg was normal on both arms and left leg but damage in nerve that runs along my tibia in right leg but normal in left leg.
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1 ReactionDoes this product contain thc? I'm assuming you live in the states and this is ok to ship. Thanks.
Hemp seed does not have Thc. This is just a wonderful product that you should look into if you have neuropathy pain. I live in Canada and I do not know what their shipping policies are.
Good luck