Speaking of just being diagnosed.......

Discussion in 'Fibromyalgia Main Forum' started by jstbrznby, Apr 5, 2003.

  1. jstbrznby

    jstbrznby New Member

    And Welcome Shari, I just saw my PM Dr. yesterday for the first time since this CFS word slipped thru another one of my Dr.s lips. NOW, anxious to share this with her I asked how many patients she had with it .....She sure stopped me right in my tracks. Her take on this is ...FM &CFS (basically all the related auto-immune disease)don't produce vivid enough symptoms and that she will not diagnose strictly CMA or FH! She wants me to go see an Endocrinoligst to narrow down exactly what is the culprit of my all my symptoms. Has anyone else been thru this? I am game to find this Dr. and to find out if there is something more defnitive about all this mess. If it would have been anyone but her I would be atgravated but she doesn't deny my symptoms are real and she would never leave me without my Pain meds so I trust her judgement I just don't want to have to go thru the whole rat race of another doctor thinking I am nut! Thanks for listening and I look forward to any feedback on ths subject!!!!! Hugs.....PAM
  2. layinglow

    layinglow New Member

    Hi Pam--been there, done that, lol.
    I was seeing doctors at a major medical hospital. The Doctor of Infectious Disease, discounted any diagnosis of FMS or CFS, saying that "95% of patients diagnosed with such were just patients suffering from depression." I was then referred to an endocrinologist for more testing. He said of course, tests were normal, and asked if I had ever heard of Fibromyalgia, and said he would give me a referral to a rheumatologist. I declined. I have left all the "ologist" behind and now see a D.O, in private practice, who specializes in CFS/FMS/MCS, and am receiving aggressive, and thorough treatment, with an emphasis placed on the need for individual treatment regimes for each patient. Since he is a D.O., he can prescribe medications, and uses supps and vitamins, as well as alternative treatment. I have made great progress.
    To me it is imperative, to have someone who is a concerned and willing advocate, who stays atop of the latest research, and is willing to experiment with you, as what works for one, doesn't always work for another.
    Together, we have eliminated IBS, sleep deprivation, pain is managed, eliminated systemic Candiasis, reduced significantly neural symptoms, and are now addressing my fatique problems with at home B12 and BComplex injections.
    My advice---find a specialist in FM/CFS.
    Best wishes,
  3. KayL

    KayL New Member

    Pam, my osteopath was the first to diagnose me, and I've been seeing him for several years. I think he was at a loss as to what to do for me so he referred me to a rheumy, who agreed with his diagnosis, but after reviewing all the test results we had at that time, felt she couldn't do anything more for me than he was already doing. So she referred me to an endocrinologist. He ran a lot of specific hormone and thyroid tests and the only thing that has come up abnormal is that my level of IGF-1 is low. I just had a stim test a few weeks ago and see him again on the 14th for results and treatment options. He and the rheumy both told me that if my IGF-1 level were more in the normal range I will most likely experience a decrease in symptoms. So, I say give the endocrinologist a chance. If he doesn't find anything new, you don't have to go back. Good luck.

  4. jstbrznby

    jstbrznby New Member

    I feel a lot better talking to you who have BTDT (been there done that), I went to a Ruemy and he knew something was up but my tests just never came back with much supporting evidence. The biggest evidence it looks like we have is our symptoms and no one can convince me that it is a coincidence we all have such parelling symptoms. SO, I am not against going to an ENDO I just hate the whole process.

    And, LL I would be happy to see a DO but have no Idea what they are? I'm a little slow so knock me in the head but let me know what you mean and where to find one.

    Thanks again.....Pam