ME, need to find a DR in US who can diagnose it

Discussion in 'Fibromyalgia Main Forum' started by sunkenhero, Jan 10, 2010.

  1. sunkenhero

    sunkenhero New Member

    my spect showed decreased cerberal blood flow throughout
    3 Brain Mri's showed multiple focul lesions in the frontal lobe and demylinization of the neural sheath that would be seen in an 80 year old person. I was 27 at the time.
    i am surprised I did not get a diagnosis of ME. Does any know a good neurologist in the US who can properly diagnos ME?
  2. TeaBisqit

    TeaBisqit Member

    Unless you go to a specialist like Dr Bell or Dr Petersen, It's very hard to get any doc in the US willing to give an ME diagnosis. You can push for a Post Orthostatic Intolerance/NMH diagnosis and you might be able to push for CFIDS if you go in with enough literature to back it up. But it won't be easy unless you go to a real specialist for this disease.

    It sounds like you definitely have it, no doubt. You can alternately try a Lyme specialist, they tend to be more open and might help you more than any regular doc.
  3. TeaBisqit

    TeaBisqit Member

    Just read your profile. I had a friend from Australia who was on vacation in Hawaii about the time you got sick, he got it, too, after swimming in the water. It is NOT just you. I lost contact with him a few years ago, but he was housebound from the disease. He definitely got it in Hawaii from swimming. I never forgot it when he told me. Kind of makes you wonder if it was a parasite or a neurotoxin, if it can live in the ocean water, I don't know.
  4. sunkenhero

    sunkenhero New Member

    its been 15 years
    still a F'ing mystery
    I now have 1 1 year old and a healthy wife and allot to be grateful for. I am now 39 and am really feelin the need to have a career and provide for my fam. just dont have the energy to do much. after 15 years, I still dont really know how to be sick. I will generally take meds so i can suit up and show up but they are never a long term solution.
    must focus on gratitiude
  5. sunkenhero

    sunkenhero New Member

    its been 15 years
    still a F'ing mystery
    I now have 1 1 year old and a healthy wife and allot to be grateful for. I am now 39 and am really feelin the need to have a career and provide for my fam. just dont have the energy to do much. after 15 years, I still dont really know how to be sick. I will generally take meds so i can suit up and show up but they are never a long term solution.
    must focus on gratitiude
  6. sunkenhero

    sunkenhero New Member

    although if I could get a diagnosis i could maybe get on diss for ME and not CFS(which I have never tried for) i always managed to scrape by somehow
  7. TeaBisqit

    TeaBisqit Member

    The American term for ME is CFIDS, Chronic Fatigue Immune Dysfunction Syndrome. That's what I got diagnosed with and what my disability is based on. You have chronic immune dysfunction, maybe you can just get them to leave out the stupid fatigue word?
  8. MamaT1967

    MamaT1967 New Member

    That is kind of weird, the first time I got "mono" I lived on Oahu. It was 1978 and I was 11 years old. It took me about 6 months to recover and at first the docs thought I might have leukemia. Anyway just thought that was weird...

    Teresa