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Small Fiber Neuropathy biopsy test results

Neuropathy | Last Active: Feb 15 2:46pm | Replies (36)

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@dbeshears1

Hi Eve - I too have been trying to get as much specific information I can on my idiopathic PN, thinking that I can focus therapies on what seems to be working best for the folks on here that know more about their type of condition. Except for the sweating, our conditions sound so similar, especially your heat and cold extreme intolerance. However, I have been told that I have severe axonal PN, shown positive by EGD results, so Neuros have said no need to test for SFN. I’m curious, did you have an EGD/nerve conduction study?

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Replies to "Hi Eve - I too have been trying to get as much specific information I can..."

Hi Debbie! Yes, I had a nerve conduction test done first, by the first neurologist I saw, it was negative. He also checked me out for MS, which was also negative. Together we began to wonder if I might be dealing with SFN, so he referred me to another neuro who did the skin punch biopsy for me. I just did some reading about axonal neuropathy, you mention it is idopathic so I assume you went through testing for the different possible causes. I am always happy when the blood work returns negative because I would rather not have many of the things I have been tested for, and it can be a double edged sword too as not knowing what has caused this and why it is happening can be stressful. I am dealing with it better though as time goes by. You have similar symptoms? Do you have stiffness, especially in your hands and feet? This is really a big deal for me, and the first symptom I had, and it is getting worse. I was a clinical massage therapist, cranial sacral, and lymphatic drainage therapist for 25 years, and a potter, but I can do none of this now. Once the stiffness got my attention, the nerve symptoms began to develop. I am negative for all rheumatoid blood work. I would think they would want to know if you have SFN too as it is a different set of nerves that are being effected. I tend to want to understand every detail, and can feel quite frustrated with what I see as a lack of interest, and sometimes knowledge on the part of the doctors. I mentioned fibromyalgia to the neuro (trying to find answers for stiffness and soreness) and he told me it is caused by depression! I couldn't believe he was so far out of date, or that he was presenting the cliched male doc to female patient perspective of it is a mental problem. I told him he was working with old information! The neuro also wondered if I might have Reynaud's re my cold feet, but SFN can also cause this, so not sure what exactly the source problem is. Small fiber neuropathy can sometimes improve if the underlying causes are known, the small fibers can regrow. I read that IVIG infusions can possibly help axonal neuropathy, I believe if there is an autoimmune component then insurance is more likely to pay for it. I apologize if I am rambling, I'm excited to have people to discuss all of this with! The perspiring I am currently experiencing is new, not something I have ever dealt with before. I am not losing sensations, I am not having numbness, I am the opposite, my nerves are hypersensitive.