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Old 04-18-2019, 06:34 PM #3
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janieg janieg is offline
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Join Date: Jan 2014
Location: Maryland
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janieg janieg is offline
Member
janieg's Avatar
 
Join Date: Jan 2014
Location: Maryland
Posts: 793
10 yr Member
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Hi Sarah,

If it makes you feel any better, I was diagnosed with SFN 5 1/2 years ago and have never had a punch biopsy. The reason I haven't is that neither neurologist I've seen felt it was necessary. The first said, "I know you have SFN, and all punch biopsy will do is confirm that. It will NOT tell us why you have it."

I have likewise had a jillion blood tests, MRIs, a nerve conduction study, spinal tap etc... and the doctors have no clue why I have this problem. If I had punch biopsy, it would come back positive or negative. If it came back positive, it would confirm the SFN diagnosis, and I would have idiopathic SFN. If it came back negative, I assume I would have an idiopathic "unknown" neurological problem. I'm not sure I see much difference between the two, so I haven't pushed for the biopsy.

I also have crazy twitching in my legs, especially after exercise, but it's not visible. I've had this twitching and vibrations in my left leg only since 1986. It wasn't until 2013 that it suddenly presented itself everywhere. Only recently have I developed a problem with horrible cramping, especially when I have too much salt.

Is your twitching visible? When my legs are twitching horribly, I can't see a thing.
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