← Return to non-length dependent neuropathy.

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kathleen123 (@kathleen123)

non-length dependent neuropathy.

Neuropathy | Last Active: May 4 7:20am | Replies (27)

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@kathleen123

I read through these. Thanks. I just wish we knew more.

When I was first diagnosed (more than 10 years ago) and then got a second opinion, I asked my neurologist to refer me to the Mayo but the Mayo refused to see me. Said after reviewing my records they didn’t think there was anything more they could offer me. From what I read it seems like that is probably still the case.

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Replies to "I read through these. Thanks. I just wish we knew more. When I was first diagnosed..."

Hi @kathleen123 and @johnbishop, I have non-lenght dependent SFN. I also have markers from Sjogren and Lupus. I was first tested for SFN 9-2018, and the results was negative. Was tested again two weeks ago, and now the test was positive. I will have a biopsy in april to confirm the diagnosis. So my neurologist and rheumatologist believe that the fiber destructions are caused by my immune sstem. I have occipital and trigeminal nerver pain, I have pain in my left hand and arm, not somuch on the right. I have tingling in both thingt and right foot. so you are not alone….

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