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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@johnbishop

Hi @anniemae, you mentioned earlier that you were diagnosed with idiopathic progressive neuropathy. Idiopathic means that they could not determine the cause of your neuropathy when they did the testing. Mine is also idiopathic (small fiber peripheral neuropathy). The neurologist told me it was most likely hereditary and I think he's correct. I've been corresponding with a cousin who has it and I'm pretty sure my sister who passed away a few years ago also had it. This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

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Replies to "Hi @anniemae, you mentioned earlier that you were diagnosed with idiopathic progressive neuropathy. Idiopathic means that..."

John, thank you for this information. I have had several tests so will look this information up. Anniemae

Another really terrific piece of info!!!!! I've been diagnosed positively with small fiber polyneuropathy and ANA. I've been taking hydroxychoroquine and azathioprine to 5 month and the numbness has continued up my body and the existing numbness has gotten worse.
Insurance won't cover IVIG and I can't afford it. The rheumatologist and the neurologist don't know what else to do. DO YOU OR ANYBODY HAVE ANY SUGGESTIONS? I HAVE ABSOLUTELY NO PAIN. I HAVE ONLY NUMBNESS. Thanks bunches to you John and everybody else!
Rose