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DiscussionMy experience with Small Fiber Neuropathy
Neuropathy | Last Active: May 24, 2022 | Replies (85)Comment receiving replies
Replies to "Jim. Thank you for you response . I am sorry to hear what you are going..."
I was tested for MS because my youngest sister has it. I don't recall any test for ALS, but what I read last night said that involuntary twitching is something that starts after having ALS, not a sign that might be a precursor to having the disease. I also read that it can be caused by pn.
Jim
@laureen8844 Laureen, I wasn't sure if you saw my post to you about spinal cord issues. I know that is an answer that no one wants, and I learned all this on my own the hard way in spite of everything my doctors missed. You do have to advocate for yourself until you find correct answers and consider other issues to either find them or rule them out. If you do become a candidate for cervical spine surgery, I can tell you it was much easier than I expected it to be, and I was terrified. I found an excellent surgeon and that makes a big difference in the success of the outcome. Having 2 years to think about spine surgery that was inevitable was torture, but I figured out how to help myself emotionally and get through it and made the decisions that gave me a much better quality of life. That's why I'm here on Connect because this is hard, but overcoming a problem like this is life changing and I want to help people understand how much power they have in their own health decisions that will affect their future quality of life. FYI, while I was at Mayo in a waiting area, I visited with a patient who had ALS, and I could see the muscles jumping in his arm constantly all over, not just one muscle, but several in his forearm. My own experience with jumping muscles was that it was localized to one muscle and it changed if I changed my position which changed how my spinal cord moved within the spinal canal. I do not think that someone with ALS has the ability to change position and stop the contractions. Then you look for specific nerves that can be pinched, or the nerve roots from the spinal cord, or even compression of the spinal cord itself. Those would be physical issues. There probably are biochemical issues like imbalances or deficiencies that can contribute to jumping muscles. It is chemistry and electrical impulses that send nerve impulses and cause muscle contractions. Magnesium helps muscles relax, but that would not help a physical issue. With your history of a cervical herniation, it is worth looking to see if a spine issue has advanced beyond the initial injury. It took 20 years for my issues to get bad enough to need surgery. I knew if I didn't get surgery, I would be headed toward disability and paralysis. When the stakes are that high, you have to get it figured out correctly. Please reach out to me if you need to.