Has anyone gotten help from the Mayo Clinic?

Discussion in 'Fibromyalgia Main Forum' started by mms, Mar 10, 2003.

  1. mms

    mms New Member

    We are willing to travel for help Has anyone gotten help for FMS from the Mayo Clinic- either the main one or the Scottsdale satellite office?

    Or Johns Hopkins?

    Thanks!
  2. Revella

    Revella New Member

    I haven't tried the care for fibro at Mayo. But my husband is waiting for a liver transplant and the only way my insurance will pay for that is if we go to Mayo for it. They send us to Rochester, MN. If you go to Mayo and get help for your fibro, please let me know and I may try to get in on one of our trips for my husband.

    Good luck!

    Revella
  3. clueless

    clueless New Member

    A doctor in Florida referred me to the satellite hospital in Jacksonville, Florida for the pain of fibro. and they would not accept me.I don`t know if this is true in other hospitals. I was very disappointed as I had a higher opinion of them. I hope you have better luck with them.
  4. Plantscaper

    Plantscaper New Member

    WE TOOK MY MOTHER UP TO THE ROCHESTER BRANCH AND THAT IS WHERE THEIR RHUEMATOLOGY SECTION IS LOCATED, SO YOU SHOULD CHECK WITH THAT BRANCH.. MY MOTHER SAW THE DIRECTOR OF THE RHEMATOLOGY DIVISION.. They asked if there was any work going on CFS, but not FM.. I heard that John Hopkins was suppose to start doing work on CFS, but again, I don't know about FM..but I would think that they might..if CFS is starting to be recognized, why not? Generally, they liked the doc and the cost was no more than any other physcian..[This Message was Edited on 03/10/2003]
  5. northwoodssue

    northwoodssue New Member

    Hi MMS:
    Before I tell my Mayo story, I need to give you some background. Bear with me! I was dx'd with fms in l996 and treated with all the usual stuff, then the rheumy thought I had lupus and tx'd me for that too. I wanted another opinion, so went to another rheumy who said I had fms and also was 99% sure I had lupus and treated me with the lupus meds. They are prednisone, plaquenil, plus other fms meds. He wanted to start me on a chemo drug called methotrexate for lupus, but I wasn't sure I wanted to do it, with all the lab work, side effects, etc. So I went to the mayo clinic 4 years later for a 3rd opinion.
    I saw a specialist in rheumatology for fms, lupus, etc. His name is Dr. Steve Yterberg(sp?) and I was very impressed with him. He did alot of tests, a very thorough exam, then I went back to see him with all the test results the same day and was given a thorough explanation in terms I could understand why I had fms and why I DID not have lupus. I was very impressed with his exam and explanation . The treatment was the same as before, sleep meds, pain meds, etc. But I was greatly relieved to finally find out I did not have lupus and did not have to go on chemo. Their lab tests are the best in the world, most up to date. It seems the ANA with high titer I had at other clinics only registered mildly high on the mayo's up to date test.
    So, all those years worrying about the wrong disease for nothing, and all that extra treatment with prednisone.
    The post about the Mayo sounds like s

    he was sent to a pain control clinic, not a rheumatologist for fms. That person had a completely different experience than I did.
    I would highly recommend the Mayo clinic. I went to the one in Rochester, Mn, as I live in Mn. I would do it again in a flash if I had a question about any disease. They are the best!!!! Check out their website, easy to find.
    Good luck to you, and let us know if you went to the Mayo!
    sue
    PS: The Mayo has a 3 day fibromyalgia clinic that has a variety of treatments, classes on handling fms, physical therapy, etc. I didn't do it, as I went thru all that in the 4 years before, and I am an RN and didn't need the extra teaching they would do. It would be excellent for someone else who needed more info, treatment modalities, etc. Sounded like a great idea to me!
    [This Message was Edited on 03/11/2003]
  6. joannie1

    joannie1 New Member

    I didn't realize that we needed to be nurses or something of the sort in this support group. I guess the rest of really do not know what we're talking about, nor do we have the knowledge to know about pain management that we need to go through a pain clinic. Just to let you know I did delete my message because obviously I know nothing. To let you know also, i know how to manage my pain also but it was not a choice I could make for the pain clinic.
    I will be leaving the message board that way i don't step on anyone elses toes either for not knowing what I am talking about.
    Good luck to all my friends.
    Joannie