Anyone go to Mayo? Would like info.

Discussion in 'Fibromyalgia Main Forum' started by cjcookie, Dec 31, 2006.

  1. cjcookie

    cjcookie New Member

    I'm thinking about going to the Mayo Clinic. I've been so sick lately and my jumpy hands and legs (tremors?) have been getting much worse. I can barely eat without getting sick. I fell again two days ago (right on my tail bone) and then again after I got up. Mom was trying to help and she fell on me and hurt herself. I don't think I can ever go back to my house and stay alone. I'd like to see if they could help.

    If anyone has gone, I'd like to hear their experiences. Where do you stay? Is there a reduced price hotel, etc?

    Thanks and Happy New Year!
  2. alaska3355

    alaska3355 New Member

    I recall that Trevor1 had gone to Mayo....I don't recall how it went. You might want to delve into some old posts of his. Right now he's in Mexico with his mom, so he won't be writing (unless he has a laptop!). Maybe they can help you with your tremors......good luck!
  3. charlenef

    charlenef New Member

    I DIDNT GO MYSELF BUT I KNOW SOMEONE ON THE BOARD DID AND THEY SAID IT WAS A BIG WASTE AND THAT THE DR DIDNT KNOW ANYTHING ABOUT FIBRO I DONT KNOW WHAT ELSE YOU MIGHT BE DEALING WITH THOUGH GOOD LUCK CHARLENE
  4. Bambi

    Bambi New Member

    in the east, but the one here in Arizona is a different animal. I have NOT gone there personally but have several friends who have. NONE had good experiences and one had what I would describe as an awful experience. So I would suggest doing what you are doing and keep asking for info from people who have gone. There HAS to be someone who was happy with them or they wouldn't stay so popular, eh?

    One friend has excellent things to say about the University of California Hospital and goes there every year for tests and to do whatever new treatments are available. She has "apparently" lost all her CFS symptoms but still has FM badly.

    When I first met her husband was pushing her around the neighborhood in a wheel chair, she didn't weigh 90 pounds (though she is small, but not THAT small normally!). She was wrapped up in a blanket and I honestly thought I was meeting a dying woman. I assumed she had cancer. It was CFS on the heels of Epstein Barr.

    She had worked her whole life until the Epstein Barr hit and then the CFS so she had to quit. She couldn't walk from the house to the car unassisted. She is still in alot of pain etc but just doesn't have all the CFS symptoms any more. I don't know what they did for her, but I know she was put on a good diet, moderate exercise and just generally more healthy lifestyle. Her weight is up to normal and she drives now.

    BUT, none of the common meds they prescribe for CFS helped her and she didn't do well on pain meds, so I just can't say what did the trick with the CFS. On her worst days with FM she huddles on the couch in a blanket, watches tv and doesn't move unless she HAS to. Her pain is bad but not as severe as mine was before meds..or if it is I don't know HOW she survives.

    I wish I could offer more.[This Message was Edited on 12/31/2006]
  5. CTuit

    CTuit New Member

    I've heard nothing but good things about the one in Minnesota and have a friend who's been there several times. From what I understand its the better of the group.
  6. mollystwin

    mollystwin New Member

    I remember some posts on this board about Mayo Clinic some time ago. You can find them with the search button. If am remembering correctly, Mayo Clinic wasnt' very helpful to anyone.
  7. rushword

    rushword New Member

    I went to Mayo last June looking for an answer as to what was wrong with me. I had been sick since 2/06. I stayed up there for 13 days. They initially gave me an appt with an Internal Medicine dr there. After the Internal Medicine Dr listened to me, he then ordered numerous tests. I was having so many different symptoms, that the did alot of blood tests, cat scans, sonograms and an MRI, colonscopy and endoscopy tests. I was there for 11 days. My initial appt was on a thursday. Mayo clinic is not open on the weekend. So I had tests that first thrusday and friday. Then didn't do anything with me till the following monday. I then had tests all that week and then the next Monday and tuesday after that. I saw several Physicians of different specialities including a Endocronologist, Neurologist, Gynocologist, Urologist. ENT and Dermatologist. The last dr I saw at Mayo on my last day there was with the Internal Medicine dr.that I had seen initially when I went to Mayo. He was the one that told me I had something called "post viral syndrome". He believed that I caught a virus in Feb. and it had turned into a post viral syndrome. The only thing he suggested to help me was to take more vitamin D and to see about Cogitive Behaviour therapy. He told me I would be sick for a looooong time. He also said I would eventually get better, but I likely would never feel as good as before I got sick in Feb.
    I was grateful for some kind of answer as to what was wrong with me. My Mayo clinic adventure cost my insurance company over $30,000. My portion was only about $700. My stay in a cheap Motel (Days Inn, just down the street from Mayo) cost about $650. for the whole time I was up in Rochester, Mn. I wasted me and my insurance companys money on some of the Doctors they had me see. Most were worthless, but some not completely. The General Internal Medicine Doctor ordered all the tests, the specialists didn't.
    So was it worth the time, money and trouble to go to Mayo clinic about 1000 miles from where I live? I guess I would say yes, even though some of it was a waste of time, I needed an explanation for what was happening to me, and none of my local specialists at home(including Infectious Disease, Endocronologist, Gynocologist, Hemotologist) didn't give me any explanation prior to going to Mayo as to what was wrong with me. I have since done more exploring/testing at home with Dr's and found other medical reasons for some of my symptoms, but have not found any better answer than "Post Viral Syndrome" for most of the symptoms that have occured. The Mayo Dr. also called it Chronic Fatigue Syndrome.
    They did rule out quite a few disorders, so they were not a waste of time.