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    I would like to talk to other sufferers of small fiber sensory neuropathy
    An_247576 posted:
    I have been suffering from this disease for about 7 years. Like the others here, I had to fight and be pro-active to finally get a dx. I am frustrated with the lack of research for a cure, or at least more breakthroughs in determining the causes of this type of neuropathy. It has finally spread to my hands. I stay so medicated I can barely function and I finally gave in to the army of doctors wanting me to have a neural stimulator implanted. Not impressed with it so far. Does anyone know of any research into this disease as I am to the point where being a lab rat has it's own appeal. I believe that the pharmaceutical companies would prefer to sell meds instead of cures. Hopefully someone can get a grant to study this terrible disease. Help!
    lifes responded:

    I thought perhaps someone with "small fiber sensory" type would answer you, but apparently no one with that condition has seen your post yet.

    I suffer from NON-diabetic neuropathy. No one has bothered to give mine a precise diagnosis-- just "neuropathy". Mine started in my groin after blood clots from groin to knees. However, I also have severe disk loss in my lower spine.

    Recently, just to make my life even more interesting, neuropathy has started in my breasts (nipples to be exact)!! Now try telling a doctor, "My nipples burn" when I'm a woman and the docs are men! grrr Plus, I have neck, shoulder, and thoracic spinal problems--- so, which is making the neuropathy?? To do MRIs would mean at least 4 or more MRis at 45 minutes EACH... and I can't lay flat that long. Soooooo.... after 4 doctors... I'm "living with it". Just like my legs, just "air" will "hurt"... and cold air is really bad.

    If on Neurontin / Gabapentin, you might ask to switch to Trileptal. It is less sedating-- for me. A neuro would need to start you on both, then reduce the Gabapentin as he increased the Trileptal. NOTE: Neuros overlook Trileptal and other anti-seizure meds, because drug companies have pushed neurontin -- BUT any anti-seizure can have the same benefit to reduce neuropathic pain.

    I shy away from anything being implanted. How is it going for you now?

    susiemargaret responded:
    hello, A277 --

    i'm afraid that i know hardly anything about small-fiber sensory neuropathy, but it occurred to me that if you haven't already done so, you might want to check out clinical trials that are ongoing, and perhaps those that are already complete in the hope that the head of the project might have some cutting-edge knowledge that has not yet made it into widespread clinical application.

    first i searched the govt clinical trials site, , using the terms -- ("small fiber" AND sensory AND neuropathy) -- and asking for only the trials that are still recruiting; i got this list, fiber%22 AND sensory AND neuropathy&recr=Open .

    being ignorant of whether "sensory" needed to be in the name, i also searched using the terms -- ("small fiber" AND neuropathy) -- and asking for only the trials that are still recruiting; i got this list, fiber%22 AND neuropathy%29&recr=Open .

    in addition, i have learned in the past that even with trials that are finished or at least no longer recruiting, sometimes contacting the head of the project yields info that is not yet widely known. therefore i searched using the terms -- ("small fiber" AND neuropathy) -- with no restrictions on current status of the trial; i got this list, fiber%22 AND neuropathy%29 .

    there are a couple of other sites where it is possible to search for clinical trials; i've never been sure if they all duplicate each other, so i'll just list them for your investigation if you are so inclined --

    -- centerWatch, ,

    -- trialsCentral, , and

    -- orphaNet, .

    finally, you can sign yourself up as a potential volunteer in case someone in the future does a trial or a study involving your particular interests, . that way they will be able to contact you when they are recruiting.

    i send you caring thoughts and hope you can find some relief soon.

    -- susie margaret

    PS -- hello, LIFES! it's nice to hear from you!
    what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
    Dustlawyer replied to susiemargaret's response:
    Thanks Susie, I will check all of this out! My specialist never has anything for me when I ask about trials etc.
    Dustlawyer replied to lifes's response:
    I am allergic to both Gabapentin and Trileptal. I have been put on everything they have for this condition. I can only take Lyrica and Tramodol. I am at max dose for both. I resisted he Neural Stimulator for years telling them I would not get it until they dx what type of neuropathy I had since some are treatable. Once I finally received my dx (most doctors are not interested in finding out the type b/c they are lazy and/or don't care), I caved and have had the implant for 2 years. After finally getting it programmed right, it helps but now I think it is causing the severe pain in my back where the wires tie in. I have a bone scan scheduled in 2 weeks to try and see a spot they noticed there from my CAT scan. I hope you have found some relief by now, it seems to be in short supply for people who suffer with Neuropathy. I have found a certain herbal remedy to be very helpful, but I can only take it at night as I cannot work or function well with it. This herbal remedy has not been approved in all states, if you know what I mean. Lol.

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