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Small Fiber Neuropathy: What helps?

Neuropathy | Last Active: May 17 2:03pm | Replies (284)

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@brie87144

@lisadog33 I have a lot of the same issues. I was diagnosed in July. But like you said they said my other issues weren't apart of my SFN. Then I was diagnosed with chronic fatigue and bladder issues with it releasing it self to not being able to go at all. And diagnosed with IBS. I have a whole bunch of other things going on too but after being with mayo for 16 months, they still had no answers. And they weren't treating anything. My insurance found me another opinion and I was finally diagnosed with AAD-EDS (articilo-autonomic disorder/ Ehlers- Danlos spectrum disorder) which explains everything I have going on. From what I was told is that small fiber is caused by something. But trying to pinpoint it is the hard part and sometimes they never do. I was blessed when my insurance did an evaluation over my medical record when I asked and got me to the right doctor to be diagnosed. Have they looked for POTs? I have POTs and they said it's lile your body is stuck in fight or flight and it makes everything work incorrectly. Like my bladder, heart, bowels and hearing, etc

Not sure this will be much help but please if you need to reach out.

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Replies to "@lisadog33 I have a lot of the same issues. I was diagnosed in July. But like..."

Brie- Thanks for your posting. Your posting is a ray of hope for symptoms my doctors cannot explain except to call them ideopathic. Can you please clarify the POTs condition as my autonomic nervous system regularly exhibits "fight or flight" frequently? Thanks again for your posting. Dave

Hello,

I was recently diagnosed with SFN, but have also had also every problem you described you have had above. I have been to Mayo and other hospitals with not much if any help. Who diagnosed you? I would appreciate any other advice you have. Thank you so very much!