ANYONE BEEN TO MAYO OR A UNIVERSITY HOSPITAL FOR A DIAGNOSES

Discussion in 'Fibromyalgia Main Forum' started by FOYBOYFOY, Jul 24, 2006.

  1. FOYBOYFOY

    FOYBOYFOY New Member

    HELLO
    AS MY PROFILE EXPLAINS IVE BEEN TO 6 DOCTORS HAVE GOTTEN 3 DIFFERENT DIAGNOSES(ONE BEING CFS & FM) BUT I THINK THEY ARE ALL WRONG ?
    1. HAVE YOU BEEN TO ONE OF THESE PLACES
    2. HOW DID YOU GET IN
    3. DID SEVERAL DOCTORS COME AND LOOK AT YOUR CHARTS
    4. WAS THIS A SPECIAL PROGRAM AND WHAT WAS IT CALLED

    VERY FRUSTERATING GOOD LUCK AND GOD BLESS
  2. Sandyz

    Sandyz New Member

    I got diagnosed at Mayo Clinic 15 years ago. A Rheumy was who I saw there. Although he knew what I had, he seemed to think FM was all stress related. I hope that has changed and they have more upto date information on it. From what people have said here though that have gone recently, they still aren`t very good treating Fm or CFS.

    When I went to the FFC the doctor there confirmed what I knew all along, that I had both CFS and Fm.
  3. 1sweetie

    1sweetie New Member

    My adventure into the world of CFS/FM began at Duke University. The whole process is confusing. If you feel like dealing with billing errors, appointments not made, very opinionated people, long waits, bad advice, and for me a total of a 4 hour driving time, I would recommend them.

    Honestly, I was not healthy enough to deal with their system. The doctor would tell me of other doctors in their system that I needed to see and the appointments would not be made. It was absolutely the worse. The billing department was unbelievable and they were the ones that were also suppose to be scheduling. They were just RUDE. I was given medication that made me much worse and I was on it for over 1 year before an associate of the first doctor told me how it could and did cause symptoms that I thought were just part of this disease. I was not in the clinic. I was a full pay person that was supposed to be seeing the best in their fields.

    When I went originally, I did not know I had CFS/FM. I went because of the increasing severity of migraines/headaches and cognitive problems. At the time, I also my blood pressure was having severe drops if I stood, my ears were ringing, my throat was sore, my glands were swollen, I had thick mucous that would choke me, and I was extremely short of breath (I can't remember all of the other problems). They said that it was impossible for all of this to be linked and that it was probably psychological and that my breathing was panic attacks. It only happened when I stood or bent over or reached or walked up a small incline. A lay person would know you don't have panic attacks with the slightest amount of exertion.

    I did get a neurophysio test there and it did probably did help with obtaining SSD although it still eluded to the stresses in my life which is going to cause me to lose my LTD with my employer.

    I could not handle the pressure of their system. They wanted me to try biofeedback and I went for what I thought was a session. It turned into a 4 hour discussion of my mental well being. I was suppose to get a call that week to set up the weekly sessions. Six weeks later, I finally called them. I found out later that the person that was to work with me graduated and guess what. Two months after she was to see me at Duke she called me from her new private practice and wanted to help me. She had taken my records with her.

    As you can tell, my experience was not good. I was very disillusioned and disappointed. B

    Best of luck to you.
  4. lovethesun

    lovethesun New Member

    by a neurologist.my internest and rhuematologist were thare and I had all my Bloodwork and tests done there.I highly recommend it,Linda.
  5. place

    place New Member

    Although not for Fibro, I have been to several doc in OSU, the docs were great but the office was a disaster.

    They hired college kids, so apt were skipped, cancled, billed wrong. It was like everyone there was working with a hangover!

  6. hagardreams

    hagardreams New Member

    I was diagnosed at a university hospital, but not treated there. They told me that Fibromyalgia was not a serious enough problem to give me any pain pills, that I had to learn to live with it. Thats why I go else where to get treatment. Its sad because I am on 100% chairity there, and I still have to go spend money on an outside doctor to get help. This place is a joke anyway. It took them way too long to get my hysterectomy done, when I was in ungodly pain, and had unbarable, and miserable heavy cycles that was causing more pain, but also problems with my diabetes.
    Sorry that wasnt the question, I guess I just needed to vent.
    My diagnosis took over 5 years to get. They took their time, thank God the pain wasnt as bad back then as it is now, or I wouldnt be here.
    Without nameing any names, we'll just say here" WHERE THE WIND COMES SWEEPING DOWN THE PLAINS", is where I go.
    I could go on and on about that place, but whats the point, I now go there only for emergencies.
    My experience with university hospitals is you see the student, and the student reports to his chief in charge. That doctor makes the final decision on your diagnosis without even seeing you. The student you get has very little experience with real people, and they only get the advise from one head doctor.
    Good luck in getting the right diagnosis.
    God bless, Julie
  7. Lolalee

    Lolalee New Member

    I've never been, but have felt ill enough to consider it. I spoke to my wonderful doc who used to treat me when I lived in Texas and asked his opinion. He said it's hit and miss. If I am lucky enough to get a physician at Mayo who believes in FMS and CFIDS then it might help. Problem is you don't know if that's who you will get.

    I decided not to go for now.

    Lolalee
  8. Marta608

    Marta608 Member

    After testing positive for EBV, I was diagnosed eleven years ago at the University of Michigan Hospital in Ann Arbor, MI. There was only one doctor, an internist in the Infectious Diseases Department who I'd heard about and requested a referral from my DO. As far as I know the program is no longer available.

    Just a side note: I'd pretty much already diagnosed myself and went in for a "second opinion". Unfortunately he "agreed with me" after over an hour of testing (trigger points, neurological tests, many questions, etc.). He felt strongly that CFS was caused by neurotransmitter dysfunction and since then I've come to agree with him.

    I remember very well how relieved I was to get the diagnosis - finally! I knew what was wrong with me! - but it didn't take long to realize that I was still sick and had no hope of a cure.

    I wish I could be of more help. You might consider a FFC if you can afford it.

    Best of luck,
    Marta
  9. lilaclover30

    lilaclover30 New Member

    i went to Mayo's before the pain began. Something was wrong with my sight. They found =nothing and diagnosed me ad "nervous."

    My hubby thought that was great and when other things appeared he wasn't too happy with ME.k We had a bad 3 yearsas over ;it - he got mad at me if I sneezed!!!!!!

    He thought I was a lot of thiungs and I cried a lot. he has accepted it now, most of time, and relationship is somewhat better.

    i don't advise it unless you have a lot of pain!!!!!!!

    Good Luck

    joan
  10. twitcher

    twitcher New Member

    I first saw a neuro. He said fibro. I then saw the rheumy who diagnosed me without even checking for the tender points.I think they are both wrong. They coded one of my visits wrong and so insurance didn't pay and I've been fighting since. It really was not a good experience.
  11. FOYBOYFOY

    FOYBOYFOY New Member

    SWEETIE
    THANKS FOR YOUR TIME, THAT SOUNDS VERY DISSAPOINTING. GOD BLESS FOY
  12. FOYBOYFOY

    FOYBOYFOY New Member

    JULIE
    SOUNDS LIKE A NIGHTMARE GOD BLESS AND THX
  13. FOYBOYFOY

    FOYBOYFOY New Member

    MARTA
    THANKS FOR YOUR TIME, HAVENT GOT TO MANY GOOD RESPONSES
    GOD BLESS FOY
  14. pam_d

    pam_d New Member

    ...with FM symptoms who was dx'd at Mayo. It turned out she had Multiple Sclerosis, but I know they were seriously looking at MS, FM and Lyme. I think she had a good experience there, I do not know who her specific doctor was.

    Hugs,
    Pam
  15. IndianPrincess

    IndianPrincess New Member

    FoyBoyFoy,
    I saw on your profile Arizona/California so I'm not sure where you live now.

    If you live in Arizona, I suggest you contact attorney
    Scott Davis. He is a contributor to this site.

    Ask him if he can give you a referral to a doctor.

    It is not only important to find a competent doctor but even more important one who is an activist and will support you!


    Cindy
  16. kellyamos

    kellyamos New Member

    I was dx with RA in 1999. 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 had a real attitude and then just walked out of the room. Needless to say he was FIRED right then.

    I decided to contact the Mayo in Phoenix and I got an appointment in August. 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 fnal 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 am fighting this still with them... 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.

    I want to tell people to steer far, far away from the Mayo. This was the most stressful, disappointing and upsetting experience of my life.

    I have finally found a doc that has helped me some and I do wish you luck in finding pain relief and a compassionte doc.
  17. FOYBOYFOY

    FOYBOYFOY New Member

    LOMA LINDA IS WHERE IM CONCIDERING ? DID THEY ADMIT YOU FOR A FEW DAYS ? THANKS FOY
  18. FOYBOYFOY

    FOYBOYFOY New Member

    WHAT A NIGHTMARE- THANKS FOR YOUR TIME GOD BLESS FOY
  19. FOYBOYFOY

    FOYBOYFOY New Member

    THANKS FOR YOU TIME AND LETTER GOD BLESS FOY
  20. Kim

    Kim New Member

    They dx me with fibromyalgia in 1999. The doctor said he believed I had chronic fatigue but it wasn't a recognized dx at the time and my insurance wouldn't pay if they dx me with it. He also dx me with severe clinical depression.

    I went through a battery of tests from five different specialists to rule out many other diseases and dx some other problems (acid reflux, heart arrhythmia). They were thorough.

    They arranged for me to get treatment for the depression and after the depression lifted my other symptoms improved so much I was able to go back to work as a full-time college professor and write a text book. I still have the symptoms but, as long as the depression is under control, I can manage. When the depression rears its ugly head, the symptoms multiply tenfold.