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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 6 minutes ago | Replies (6174)

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@sherryw

@summertime4 I wish I could answer your question with certainty. This diagnosis is frustrating. @johnbishop posted a video that I watched and it gives you an idea of the types of neuropathy and diagnostic tools. My neurologist, after extensive lab work/MRIs/ nerve/muscle studies, said that I have idiopathic small fiber neuropathy. He is reluctant to do the skin biopsy because the results wouldn’t change my treatment. I would like to move forward with the skin biopsy

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Replies to "@summertime4 I wish I could answer your question with certainty. This diagnosis is frustrating. @johnbishop posted..."

I would advise getting the skin punch test. It will tell you if your SFN is length dependent on non-length dependent and give you a greater knowledge about the severity of your SFN. I did the test and mine is non-length dependent. Further pushing and more doctors, I ended up at a cardiologist, where I was diagnosed with dysautonomia (a group of conditions affecting the autonomic nervous system). More specifically, a parasympathetic abnormality and am now on a beta blocker. Guess what? 90% of the pain and the pins/needles are gone. While the genesis of my condition was a very traumatic emergency abdominal surgery in which I nearly died in 2012, the resulting disruption to my ability to absorb vitamins and minerals, along with the obliteration of my microbiome, sent my autonomic system out of control, where it stayed. Anyway I hope this helps you be bold in your journey. It's not easy but sometimes there is an answer! I was not willing to take "idiopathic" or numerous other diagnosis as enough information. After literally dozens of doctors and almost 5 years, I found what I needed to do. Good luck!!!