← 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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@ncameron

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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Replies to "Hi @kathleen123 and @johnbishop, I have non-lenght dependent SFN. I also have markers from Sjogren and..."

I have had some autoimmune markers as well going back 40 years and was forced to retire early because of a pain syndrome I developed after cataract surgery. For many years afterwards I had to live in a dark room, couldn’t read or watch tv. Still can tolerate very little light or eye use. Thanks heavens for text to speech. What upsets me most is physicians who don’t “get” pain syndromes and get perturbed when you aren’t compliant with their recommendations that you know you can’t tolerate. Not to mention not being able to get treatments for conditions because the pain from the tx will be intolerable. I wish you the best.

Hi. I have similar symptoms which include my face (more on the left side) and my tongue in addition to my limbs. I am in the beginning stage (idiopathic) of this illness. Have the symptoms gotten worse over years? If so, how fast did they progress? Thanks very much.

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