Mayo Clinic

Discussion in 'Fibromyalgia Main Forum' started by cristine04, Apr 11, 2003.

  1. cristine04

    cristine04 New Member

    Hi I have read some posts on this board about mayo Clinic..I think this is where I am headed. PLease give me any feedback on this...looks as if I have some rheumatological problem set off by the flu shot. I live in california so I am wondering can I just go to the one in AZ b/c of proximity?? Or do certain spots (ie., Minnesota since it's the biggest and first clinic, or Florida offer different things/specializations? Any help or experiences appreciated.
  2. nancyw

    nancyw New Member

    Hi Cristine: I may be going the same route - to Mayo Clinic. I live in New Mexico and the clinic in Phoenix is the closest to me. My daughter's mother-in-law went there for her dx of Raynauds and she had some information pamphlets that she had. You should look them up on the web and call them directly regarding your particular problems. It takes a couple of months to get an appointment, but it's easier to get them during the summer in Phoenix because it's so hot people don't like to go out there. I'm sure Mayo will give you the best advice on which facility to go to, and they can give you information on costs and if they accept your insurance (if you have any). Good luck.
  3. Harmony

    Harmony New Member

    Christine, My parents and sister go to the Mayo Clinic in Arizona. I also live in the Phoenix area. They tell me that people go to the one in AZ from all over the world. It's a great place and will be well worth your trip. There is no reason to go to the one in Minn. since you are closer to Phx. The Dr.'s do concur with the Dr.'s in Minn at times. My sister had surgery at the Mayo here and they even faxed her films and records to Minn. to discuss her problem. They will make sure you are taken care of. My ins. doesn't cover there or I'd be going there too.

    Love, Harmony
  4. 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!!!! Anyway, just wanted to pass this on . . . might do a separate post on it . . . Love, Terri
  5. kerrymygirl

    kerrymygirl New Member

    I juast want to say buyer be aware! The Mayo sounds to be about 10 yrs. behind the times. Poss. if you punch in Mayo on top it may help you. They think 1mo. of their therapy which has been done yrs ago is a cure. I do believe alot has to do with the doc you get so you may be o.k. All my friends were very disappointed and just came home the same or feeling worse from treatment of docs. Plus a $$$$$ bit short in the wallet. Good Luck, (maybe you`ll get a good doc )or learn more here, seems to be more intelligence on this subject on the board or interenet. Not that all of it is right either but atleast more concern & research. Hugss
  6. Mikie

    Mikie Moderator

    We have all these docs and clinics around the country which are supposed to be "the best" and yet we seldom hear of anyone who was actually helped by spending all that money and going through all that testing.

    I've decided to just read as much as I can and work with my own docs to try to get well. So far, I've had some pretty dramatic results, but I still have CFIDS relapses.

    Love, Mikie