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  • I think I may have small nerve fiber neuropathy? please help???

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    Old 08-18-2004, 01:29 PM   #1
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    rekha HB User
    I think I may have small nerve fiber neuropathy? please help???

    Hello to all ! I hope that anybody out there with a rare type of neuropathy called Small nerve fiber neuropathy can help me. So far this is the closest to the symptoms I have been having for the last several months. I am in debilitating pain. It is severly effecting my life. MY story can be found in the next page under my name and heading "do I have PN or RSD"

    I have and appt with a neurologist on the 30th. The pain doctor I am seeing does not believe I have RSD and now, neither do I. I have some type of neuropathy. However I have bizarre and debilitating symptoms that are extremely painful from my feet to my head/scalp.

    cant tolerate heat.
    cant tolerate cold temps
    hot pins poking me
    electric burning sensations in body
    creepy crawly sensations

    My quality of life has been severly effected. I absolutely cannot even leave my house during the day. I came across an old post from someone on this forum with my exact symptoms of heat/cold intolerance who had been diagnosed with small fiber neuropathy. My problem is that emg's dont pick this neuropathy up and I dont think that my hospital has qst or nerve biopsy's, and I dont know how to approach my doctor, saying, I know what I have....

    Any suggestions? Please anyone with small fiber neuropathy, please give me some insight...what has worked for you, vitamins, supplements, what should I tell the dr....any advice.....I am in excruciating pain from head to toe and no meds are working...

    thanks in advance....Rekha

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    Old 08-20-2004, 03:29 AM   #2
    Join Date: Jun 2003
    Posts: 303
    riceneuroni HB User
    Re: I think I may have small nerve fiber neuropathy? please help???

    Small fiber neuropathy is not very rare, and don't fret about suggesting any diagnosis to the docs. Let them run their tests. Unless something turns up on them most docs likely will never mention the term - even if those are the nerves that are inflamed. Neuropathy is just so much mystery. I've had every known test and seen lots of docs of all different types. Take it from me, they'll just shrug their shoulders and run more tests. That's how they make their money.

    The only things that have helped me are a diet free of things I'm allergic to and swimming. These two things brought my debilitating pain under control. Every time I let the exercise slip for awhile I start feeling the neuropathy returning to my feet and hands. I can't afford to let it go too long. I did once and ended up back in the wheel chair. The price of an office job, too much stress, and a comfortable life? Who knows. You asked what's helped. These have helped me. Doctors won't suggest diet and exercise. But then some folks get neuropathy who are very active. I think most folks never find the cause. Good luck.

    Last edited by riceneuroni; 08-20-2004 at 03:31 AM.

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