FIRST TIME Writing--Just got back from MAYO CLINIC

Discussion in 'Fibromyalgia Main Forum' started by gazinta, Apr 27, 2003.

  1. gazinta

    gazinta New Member

    Hi Everyone!!!
    THis is the first time that I am writing!!! Thanks so much for all the great info. I have been ill with Fibro for 7 years and have been to 23 different doctor's in NYC.... I finally went to the MAYO CLINIC in Rochester, Minn. and was their for 11 days. THEY ARE THE BEST IN THE WORLD. I am going back on June 1st for 3 days of FIBRO workshops. THey also have a great FIBRO book you can get at the MAYO CLINIC website. If yo have any questions, you can contact me at nycleggylady@msn.com Robyn
    There are alot of very inexpensive motels in the area.
  2. Solstice

    Solstice New Member

    for the better it sounds like. I am happy for you that you have had some success from going there.

    I went there in '83 because I had been to so many docs and had so many problems. When I went, they came to the conclusion that my muscles were "splinting" as they said. They had no name for this illness at that time. They did not believe in it . And Chronic Fatigue Immune Dysfunction, which I also have, was not something they believed in either. Do you know if they recognize that now also?

    I was not diagnosed until "94. Many long years between. The doctor I saw at one of the clinics I went to in the early 80's, (not mayo) didn't have a clue what was going on with me, after extensive tests and observation. Then in 95, after I had been diagnosed by another doctor, someone suggested to go see Doctor so and so at that same clinic I had been to before, because this doctor so and so knew alot about FMS and had been treating it. So, I went to see that doctor that was suggested in '95, and when he walked into the door of the little room I was in, low and behold it was the SAME DOCTOR I had seen in the early 80's who didn't have a clue what was going on with me. After examination and looking at my records, he said, "I"m sorry that 11 years ago, I did not know about these illnesses. If I had known then, what I know now, I would have diagnosed you with fibromyalgia and Cfids 11 years ago." It was amazing. it was truly like having an 11 year mystery solved. Like putting the puzzle together.

    I am curious what they did to diagnose you at Mayo, and what they are going to do to treat you. What are the workshops going to be like? I would love to hear more about it.

    We have so many things going on in our bodies that are all part of these DD's, and sometimes we may not be sure what is what. If I knew that Mayo recognized these DD's now, I might be inclined to go back every few years, just to get a check up, and make sure that I am not dealing with other things in addition to these DD's.

    It is so helpful to go to a clinic to get things done all at once, and not run around for months trying to do the same thing, and not being able to coordinate it all.

    I am happy that you are feeling that you are on the right path. It sure helps to know that there is something you can do.

    Please keep us informed as to how it is going.

    Peace,

    Solstice
    [This Message was Edited on 04/28/2003]
  3. Welcome!! I too would be interested in what exactly you learned from the Mayo Clinic. What meds, what the workshops involve etc. as I am sure more people here would be interested in hearing.
  4. upoemaker

    upoemaker New Member


    Hi,

    I went to the Mayo Clinic in Rochester, Minn. last year for a rheumatology appointment. I was referred by my local doctor. While there, I attended the three day fibro program too. I went with a fibro diagnosis and still lots of other problems (PLEASE SEE MY LENGTHY POST ON P. 2 ABOUT THIS). Final diagnosis also included rheumatoid arthritis, pernicious anemia and several other immune system problems.

    I would be happy to respond to questions about the Mayo Clinic and the fibro program. I know they also have a three week chronic pain intensive program which I got my insurance to approve after quite a battle and then did not attend last summer. I may this next year.

    Please read my upoemaker post and respond there. I'll be glad to give any info I can...