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Just Diagnosed with Small Fiber Neuropathy
Neuropathy | Last Active: Jul 4, 2023 | Replies (235)Comment receiving replies
I had a normal EMG yesterday so I don’t have large fiber involvement. The Neurologist did the skin biopsy to see if it is small fiber which I think it might be. I hope to get results in a week or so. I had a normal EMG in 2005 when it first started however they didn’t have the skin biopsy then or it wasn’t offered. The pain actually lessened through the years but now it’s back with a vengeance. I also was diagnosed with Erythromelagia but it is relatively mild but the other nerve pain is vicious right now and am unable to do much. The Neurologist does not know what is causing the fasciculations in feet, toes, legs. I’m just wondering if it’s from nerve damage although the fasciculations usually occur in large fiber. It’s all so strange and difficult to figure out. Thank you for any insight you may have. -Laura
Replies to "I had a normal EMG yesterday so I don’t have large fiber involvement. The Neurologist did..."
Hi Laura
I'm very sorry to hear of your diagnosis. I too have SFPN, for almost 4 years but, wasn't diagnosed until last Feb. I had a EMG/Nerve Conduction 2 years ago which was normal. They sent me on my way, as did the Rheumatologist and several Spine docs. I've progressed rapidly since fall of 2018. I am now scheduled for another EMG/Nerve study as per my request. My Neurologist didn't think I needed bc I don't line up for auto immune based on last year's spinal tap BUT, due to my decreased ability, weakened muscles and muscle twitching in my legs, he agreed to rule out further problems. The disease can really keep one guessing. Wish I had more for you. Sorry. All the best to you in your journey. Keep us posted and be well.
Rachel
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Hi, @lauraj155 - Just wanted to let you know I moved your discussion and combined it with an existing discussion in the Neuropathy group "Just Diagnosed with Small Fiber Neuropathy." This was to get you in discussion with some members who have small fiber neuropathy and see if others may have experienced fasciculations (twitching) with their disease and why this might be occurring with small fiber neuropathy. Hoping that @jakedduck1 @johnbishop @albiet @rwinney @pepperbeau might return to offer any insights on this.
Have you looked at getting another opinion about the cause of the fasciculations? Will you be undergoing treatment for these?