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Peripheral Neuropathy and benign fasciculation syndrome.
Neuropathy | Last Active: 4 days ago | Replies (102)Comment receiving replies
I'm glad I found this thread. It was beginning to feel like I was the first person in the history of the world to have this combination of symptoms. I've seen 3 neurologists who just throw their hands up and save lets give it some time and see if it gets better. I was diagnosed with SFN a year ago after skin biopsy which was below the threshold at the hip only. My symptoms were only numbness in my hands and a tingling sensation in my ear, and some nerve pain in my toes. Then one month ago I developed widespread fasciculations in seemingly every muscle in my body, constantly sweaty hands and feet, dry mouth, muscles that fatigue very easily, cramps in hands and feet, lightheadedness when standing or being on my feet for an extended period, and a drastic progression of the numbness and tingling associated with the SFN in my arms and legs and face especially at night. I thought for sure I have ALS and I am still worried about it, but an EMG last week was normal. I have not heard of any link between SFN and Fasciculations until reading this thread. So far, we have not been able to find any cause for my SFN. My only flagged results in bloodwork are slightly low copper, slightly low C3 complement, and slightly elevated bilirubin.
Replies to "I'm glad I found this thread. It was beginning to feel like I was the first..."
Hi @swats005, It's always bittersweet when someone new joins the group because it means another person suffering, but also it's one step closer to healing and also helping others. So, thank you for being here, the rest of us really appreciate your story. Know that you are not alone in your struggles, I just read your post and was checking all the boxes too. I can relate - my story is also long and complicated, so I'll spare you (I posted it recently), but - my SFN is genetic and linked to a mutation that leads to ALS-4 (phenotype). It sucks, but at least there are finally answers and a prognosis. The pain is crazy ... I'm so sorry you're dealing with all this. Praying you find answers and relief soon. We're all here to support you
Did you see this begin after getting Covid or the vaccine?
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Hello @swats005, Welcome to Connect. You are not alone in your thinking about your different symptoms. I'm glad you found this discussion and hopefully some other members can share their experience with small fiber neuropathy and fasciculations. This is one of the sites that mentions a connection - "Motor nerve damage is most commonly associated with muscle weakness. Other symptoms include painful cramps, fasciculations (uncontrolled muscle twitching ..." -- Peripheral Neuropathy Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet
Here are a few other sites for learning more about neuropathy and it's causes that you might find helpful if you haven't already seen them.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
Your list of symptoms looks pretty thorough and extensive. You also mentioned you've seen several neurologists with no real answers as to what the cause may be. Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?