what is wrong with me?? no diagnosisstill

Discussion in 'Fibromyalgia Main Forum' started by mookie333, Sep 10, 2008.

  1. mookie333

    mookie333 New Member

    Please help me you are so so smart here on this board and don't know where to turn. I have seen at least 7 doctors in the past year and all say to me that I "look fine" and there is nothing wrong with me. I've had symptoms for 9 years since the birth of my last child 9 ys ago and I have a chronic low white count 2.0, normal sed rate., high eosinophil count, low nk cell levels, pos ana., hypothyroid for the past year-low free t3 yet normal tsh 2.0, empty sella-hardly any pituitary left on my mri, vitiligo on my face over the past year.
    I have a pos. ebv titre, and positive varicella titre, negative screening for a general lymes test and negative for lupus. I think I may have cfs and my symptoms are
    Fatigue post exercise and general-more that usual
    brain fog-bad
    ears ring constantly
    nauseous every morning
    stuffy nose
    gained 15 pounds this year-not like me
    just feel flat-not sad and I don't cry so I would not say depressed.
    I've had some electrolye abnormalities on occasion-low potassium and some weird cardiac issues- pvc's and severe tachycardias with the low potassium.
    I feel dizzy and just plain out of it...hard to expplain and can't stand every doctor telling me not to worry you look fine.
    What do you all think support needed. Thanks-Mookie
  2. Timaca

    Timaca New Member

    you have some chronic viral infections going on since you mentioned positive EBV and VZV titers.

    You should also get checked for HHV-6 and chlamydia pneumonia and mycoplasma pneumonia.

    See: www.hhv-6foundation.org
    www.cpnhelp.org

    Best, Timaca
  3. greatgran

    greatgran Member

    How I can relate to your symptoms, sounds so much like me, I finally got a Dx of CFS but doubt my Dx often . Then a rheumy that doesn't believe in CFS said fibro.

    Its been 8 years and to this day I am not sure. Now I am becoming so depressed/anxiety as I question my symptoms every day.

    I know you are sick of doctors but for your peace of mind you have got to keep searching .

    Wish I could be of more help,
    greatgran
  4. jasminetee

    jasminetee Member

    There are a lot of doctors out there who don't know about CFS. It's interesting that you know you have a low NK count, in Japan CFS is called "Low Natural Killer Cell Disease".

    You've obviously had other illnesses ruled out after seeing 9 doctors, so looking at your Sx (symptoms) I'd say you probably have CFS.

    If you're able to work, you're better off without a Dx (diagnosis) of CFS IMO. You have a better chance of keeping your job and getting other ones and qualifying for Insurance. I would look into Disability Insurance for sure if this is the case and go with the fact that you don't have a Dx.

    If you can no longer work then you can try to find a doctor on the Good Doctor List here at ProHealth and/or Google for Support Groups for CFS and FMS in your area and ask them for doctor recommendations. That's the way I found my doctors and now I have 2 that are very good.

    tee