Vanderbilt Medical Center

Discussion in 'Fibromyalgia Main Forum' started by TerriM, Apr 11, 2003.

  1. TerriM

    TerriM New Member

    I actually came to stay with a friend in Tennessee to go to Vanderbilt Medical Center . . . like John's Hopkins & the Mayo Clinic, Vanderbilt it reputed to be one of the very best places to go if you are very ill in the country. Unfortunately, I found that drs. were either so zoned in to their own tiny specialty that they could rule that out, but couldn't refer me on to anyone. Not that I was them to speculate outside of their area, but no one knew who might work with CFS patients at all. I originally went because of the hypothalamus/pituitary/adrenal axis connection and they have a specialty clinic there . . . evidently CFS patients don't have a "true" hypothalamus malfunction . . . but chemicals produced there (both hormone & neurotransmitter) can still be screwed up. They told me I should see a neuropsychopharmacologist and they are nowhere to be found! I contacted the American College of them & they won't give out membership info. I've moved on from there, still finding other specialists who can't forward me to anyone else. Finally at an acute care dept for an infection I found someone to steer me at least in the right direction. I spoke with their Dysautonomia group (best in the country) and the head Dr. (Dr. Robertson) who has done CFS studies blew me off and asked me how I could afford to see the best drs. in the country! Then he told me to go back to Maryland & see Peter Rowe at John's Hopkins! Peter Rowe's office (who I had already talked with) only does pediatric cases and refers you on to the tilt table test. My dr. said I should not take the tilt table test because people usually just get sicker, I can't tolerate the adrenaline shot due to my hypersensitivity & the test doesn't really prove that much anyway (although ss disability likes to see a failing one). Now I hear that Robertson & Lowe (at Mayo) are working on a CFS study now and also that there is a Dr. at Vanderbilt (Stratton) who originally connect CFS to Chlamydia Pneumoniae! No one there knows what anyone else is doing! Unbelieveable!!!! So far I've seen the hypothalamus specialist, a geneticist (I have EDS & wanted to get it typed), an acute care dr. for infection, an allergist, a rheumatologist (who says I may have a psychological problem . . . oh, please . . . either that or FM she said) . . . an immunologist (who found a severe chronic sinus infection) and a sinus specialist -- that's just at Vanderbilt. It is sad that because our diseases have so many varying symptoms affecting so many parts of the body that we can't find anyone who can get it all together or refer us on to the right person. I luckily have a very good doctor in Washington, DC who is helping me but he is an endocrinologist and some of this is outside of his realm, but he is working with me on it anyway. (also he doesn't accept my insurance . . . the 10 BCBS doctors I went to couldn't figure out anything at all) . . . Someone else had posted on Mayo which spurred this post . . . unfortunately even the major medical centers have a problem figuring out how to help us. Terri
  2. kgg

    kgg New Member

    The system is broken . . .
  3. beckster

    beckster New Member

    this is really frustrating to see that the same kind of stuff is going on ( that is, little help, the run around)
    that went on twenty and thirty years ago when some of us were going through it! ARRRGGGHHHH! Maybe even MORE frustrating (if that's possible) because there are now a handful of treatments, if no cure, that do help and there is now also quite a body and research and literature.

    Sorry you are going through this, but you just have to keep doing what you are doing until you get whatever kind of help is going to help you.