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Small fiber Neuropathy.

I have had issues for years.  Told I have POTS from Dr. Grub, the doc who coined the term.  I work with him at UTMC in Toledo Ohio.  My heart rate would increase after lunch to 130.  Told him my issues as a child and the inability to stand the hot sun, as if I could not sweat.  I did have a sledding accident in my teenage years during the blizzard of 78.  I lost consciousness and was paralyzed for a few minutes.  Never told anyone and it took a good year to be able to walk or sit without pain.  About 10 years ago I had a numb toe and my feet began to drop as I walked and my muscles are so tight.  Feet then began to feel like I was walking on to is. My whole spine is a mess.  Pain meds work for a short period of time.  I just co time to worsen.  Is there anything that will help the pain?


  • itsautonomicitsautonomic LouisianaPosts: 2,561
    edited 03/20/2017 - 8:34 PM
    I am so sorry to hear about POTS and SFN diagnosis.  They are very common together.
    I am currently in Minnesota at a teaching hospital to have testing done one mine.
    It is certainly a bad hand, and one that there really isn't a large group of doctors versed in it and even less treatment options

    Tramatic brain or spine injuries they now know can damage the autonomic system.

    What is your current regimine for treatment ?  What testing have you had some?  I know this Dr from papers but even he needs testing to verify SFN amd POTS?

    There are several types of Dysautonomia and POTS is usiually used for people that have issues when standing from seated position , the body doesn't work right pumping blood so the defense mechanism is to pass out to return to a lying position , of course that's a severe case.

    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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