Discussion in 'Fibromyalgia Main Forum' started by Cinderbug, Jul 15, 2009.

  1. Cinderbug

    Cinderbug New Member


    I am going to the Mayo Clinic in Jacksonville, FL in Sept.

    I have been so ill for almost 4 years. My dx is CFS.

    Has anyone else gone to Mayo for CFS?

    Please tell me your experience with this,



  2. kellyamos

    kellyamos New Member

    Hi Cindy,

    I want to share my story with the Mayo in Scottsdale, AZ. Unfortunately my experience was so disappointing and a total waste of money. I have heard that many people have had bad experiences with the Mayo clinics as well. Here is my story:

    I was dx with RA in 1999 and had been seeing a Rheumy since my diagnoses. But then in June, 2005 started having severe pain all over and had no energy. Went to my Rheumy and he said " I know that all of these new symptoms are not related to the RA and I don't know what it is." He then just walked out of the room. Needless to say he was FIRED right then.

    I decided to contact the Mayo in Scottsdale, AZ and I got an appointment in August, 2005. I did a ton of research on my symptons and it led right to FM. Over the course of 2 months and about 12 visits for every test you can imagine, ie; heart, lungs, etc., All of these test came back normal. I saw an Internal Medicine Doc, then a Pulmonary Doc and finally saw a Rheumy there and she diagnosed me with FM.

    Her final statment to me was "I believe you have Fibromyalgia (which I pretty much knew from my own research) as well as the RA. Come back for a checkup in 2 months". That was it... No treatment plan, no pain meds for the dire pain I was in... Nothing..

    Then about a month later, the Mayo had the audacity to send me a bill for $4,535.00 to be paid upon receipt. That is after my insurance paid them over $9,000.00.

    My insurance as well as most, only cover usual and customary charges. The Mayo charged an average of 400% OVER the usual and customary charges for EVERY single doc visit, blood tests, x-rays, etc.

    I did fight with them for months over the bill and I was able to get them to settle for $2,500.00 which was still a waste of money.

    Their costs are outragous for absolutely nothing. I have since found out that the Mayo is infamous for running every test under the sun on patients which is obviously to rape and pilage desparate patients of every cent they can drain out of the insurance companies and patients.

    This was the most stressful, disappointing and upsetting experience of my life.

    I have finally found a pain doc that has helped me tremendously.

    So please, BEWARE of the Mayo..... I wish I had better news for you and I wish you the best of luck. You mention that you already have a diagnoses of CFS so the Mayo will not be of any help to you. All they will do is run a bazillion tests and charge you an arm and a leg and then tell you "Oh, we believe you have CFS".

    Please keep me posted as to what you decide.

    Take care,


    [This Message was Edited on 07/15/2009]
    [This Message was Edited on 07/15/2009]
  3. AuntTammie

    AuntTammie New Member

    I have not had any personal experience with Mayo, but have heard of quite a few others' experiences (for CFS and other unrelated issues) and w/o fail they have all been really bad. I would not go there if it were the only place in existence based on all that I have heard. Also, their web info on CFS (the last I checked, which was not that long ago) was pretty bad, too, and I have heard that when someone has CFS, all they do is confirm the diagnosis - no actual treatment. Sorry that I don't have something better to report.
    [This Message was Edited on 07/15/2009]
  4. spacee

    spacee Member

    Which is odd cause their "online" recommendations for CFS are pretty good. I have taken a couple to my doc (ritalin for one when I was having extreme problem with daytime sleeping).

    Just as a humorous though, you could print off Mayo's online recommendations and take them with you!

    Good luck!!

  5. ladybugmandy

    ladybugmandy Member

    dont waste your time there!!!