MAYO clinic no help

Discussion in 'Fibromyalgia Main Forum' started by emallen, Jun 28, 2003.

  1. emallen

    emallen New Member

    just got back from Mayo. felt like it was wasted trip. cried for two days. Last doctor abruptly stopped eval and said eval was cancelled. I went because I beleive my adrenal gland is shot. I have read so much, including the adrenal fatigue book. Having taken prendisone and had thryoid disease, I was hoping that they would do cortisol saliva test and check diurnal rythym and also ACTH challenge test, PCR test, and A COMPLETE ADRENAL PROFIle. guess what they did .. a blood and urine test at 10:00 am. The results were the same as in the last TWO occasions and as a repeat, a complete waste of my time. When I asked him about other tests, if he had heard of james wilson, or the GAS, he said no but "that he knew how the adrenal glands work". He said he was going to do a blood test to rule out thyroid and then send me to the cardiology dept (despite no heart problems and his not hearing a murmur or MVP) and to go get a mamagram, then he sent me to an obgyn who was the most obnoxious dude on the planet with a god complex. I knew at this first meeting, that he was not going to give the tests I thought wise or expected. I started to cry which made him annoyed. I have been feeling so poorly for seven months, and I had such high expectations. I thought these guys were cutting edge,t hat they would not leave any stone unturned...especially since i have a past bout with subacute thyroid disease which was very hard to diagnose. This is a bunch of BS. My morning cortisol was a 9. I bet if they injected ACTH it would not have jumped much. No questions answered. A colossal waste of my time. The endocrinologist wants me back up there again in two weeks for a neurology and rhuemotology appt..I am going just to see what this guys says to be on my discharge interview. In the meantime, sorry for going on and on.. so mad(*^&%$$# but what do I do and who do I see. I am in a small town. SHould I see endocrinologist, neurologist, alternative med person. I am wondering if should just administer my own darn tests (saliva) send them out and then just follow wilson's protocal. These jerks are worthless.
  2. Jen F

    Jen F New Member

    I feel bad for you...

    sorry you had such a poor experience with them, you would think they would be more helpful...

    I am in Toronto and have a friend here whose family had a bit of money, so when he got really sick he went to the Mayo Clinic. He also didn't find the Mayo Clinic that helpful when it came to CFS...

    He has recovered significantly over a 2 year period and attributes a lot of his improvement to seeing an expensive Naturopath, getting allergy shots, an anti-candida diet [he eats hardly ANY sugar], and forcing himself to get exercise.

    Mind you, I have to say, that I think it helps ALOT if you have a mother you can move in with that will do all the cooking, your laundry, the housework, etc. My friend had that and I don't and I'm finding it impossible to do all the cooking for the special diet in addition to trying to take care of all my personal needs when dealing with severe fatigue. but, I am trying and I get a little better at it with time, and I get help with housework and laundry.

    I hope you get the help you need.

    And I hope others who don't have money to waste realize the Mayo Clinic may not be the answer.
  3. elaine_p

    elaine_p New Member

    From everything I've heard/read, the Mayo Clinic doesn't recognize CFS as an illness. I don't think they believe in fibro much, either, but that may have changed.

    I've never heard of anyone with CFS having a positive experience at the Mayo, though I hope I'm wrong.
  4. Mikie

    Mikie Moderator

    When CFIDS was being investigated back in the mid-80's according to "Osler's Web." I have not heard of anyone who was greatly helped by them. In fact, we are short on people who have spent a lot of time and money at large or specialty clinics who have been significantly helped.

    I've done better with my PCP who admits he knows very little about our illnesses but who is willing to learn and try different treatments I have found in my research. I now have a very knowledgeable specialist who concurs with everything my PCP and I have been doing.

    I'm sorry you have been put through this travesty.

    Love, Mikie
  5. baybe

    baybe New Member

    I saw Jake Teitelbaum speak once, he said if you couldn't find someone to do the tests he recommended,to just copy them out of his book and send them to the Greater Rocky Mountain Laboratory. I had the tests done by my local physician and sent them in. I didn't have anything on any of the tests, but at least I eliminated alot of the basic companion type diseases. I don't know if this helps, but it's what I did. The name of Dr. Teitelbaums book is "From Fatigued to Fantastic" he writes articles for this site also. Good luck. As far as these big clinics, I went to the Lahey Clinic back in 1986 and they were of absolutely no help, all I got was that I had a strange affect, meaning I just didn't behave as expected. The doctor that made the note, notified me a month later back in Florida, the clinic was in Boston, I had travelled, that by the way I had a large mass in the area of the pain I was looking into. At that Point thanks alot. I believe in you and good luck.
  6. mycatprint

    mycatprint New Member

    About 10 years ago I went to the Mayo Clinic in Scottsdale Arizona. I had not been diagnosed with FMS yet, but (as I know now,) was presenting CFS and FMS symptoms except for the pain. I had the pain but never thought to tell anyone about it because I had been told by other drs all my life that I just had a very low threshold of pain, (actually, that I made too much toodoo over being in pain, and not to over burden other people with it.) They decided that what I had was all in my imagination and that I was possably depressed, but there wasn't a thing wrong with me physically. Then they gave me a bill for $3600.00. What a farce!

    My heart goes out to you. I hope you won't take their non-knowlege to heart, or give up on finding a dx and some treatment. Help is out there.

    hug from Cat
  7. Mikie

    Mikie Moderator

    That we have to become our own experts and work as partners with our own docs. This means finding a doc willing to learn and try things and it means a lot of time researching, reading, printing things out, highlighting them for the docs, and helping them out. Most don't have the time to research.

    It helps that we have some good researchers and medical professionals here. This is a wonderful resource for us. I found everything I needed to get on the Famvir treatment here in our library to document chronic HHV6 and other Herpes-family infections.

    Love, Mikie
  8. Applyn59

    Applyn59 New Member

    Yes, there seem to be several on this board who
    have had bad luck with them. At one time,
    I had an appt with Mayo because my brother
    lives near Jacksonville Fla. However, I then
    got major gallbladder problems and had to
    cancel... I am glad that I did.

    I did speak to a few who went and had good luck.
    One woman I spoke with had just been diagnosed
    at Mayo with MS instead of FMS. She told me she
    knew of three others that week with FMS who
    were diagnosed with MS at Mayo.

    My brother just did a major physical there last
    year. I don't think he had any problems with them.
    He doesn't have anything complicated though.
    He does have bad back and acutally he told
    me one dr. told him that he is as close to
    having FMS without having it as you can be!?!?!?!!?
    Hmmmm....

    Lynn
  9. wolflake46

    wolflake46 New Member

    I can relate with you about the mayo clinic. I spent quite sometime with them the end of May and first part of June. Even went through there FM treatment Program. My main concern was the pain from FM and the lack of sleep. I got nothing for either of them. They don't believe in giving out pain medication to people with FM. I got a copy of the letter the doctor sent my neurologist and got a good laugh. He said I was suffering from FM, Migraines and IBS. I was the one who told him I had those conditions. What a joke. I could have written the same letter. My bill came close to $5,000.00.

    Diane
    [This Message was Edited on 06/29/2003]
  10. RedB

    RedB New Member

    I might still be running around this small-town area totally undiagnosed.

    However, that is ALL that they did for me. I was lucky enough to have one kind young woman doctor there tell me that Mayo would ONLY prescribe Elavil for an antidepressant, because of it having less side-effects than any others. Imagine that! She also told me, thank God, that there was a lot of other information "out there", and many other medicines.

    The doctors I found in this area "barely" believe in FM, so I'm no further along than I was at diagnosis 6 years ago. This support group has given me more information than anything, but except for an occasional medicine that my Rheumy will let me try, I'm afraid to bring up much of the info to my doctors. Basically, they prefer it that I speak very little about my chronic pain.

    Kathy
  11. Lynda B.

    Lynda B. New Member

    I went for FMS and chronic diarrhea at the time. There were several other things too. I wasted about 3500 dollars because my insurance would not pay much for that even though my PC sent tons and tons of into to indicate that I was becoming a non-person at the time.

    It was awful except for one doc. They may be good for some things but not for me one I went.

    I could have done alot with that money.

    Lynda B.
  12. Jen F

    Jen F New Member

  13. Kim

    Kim New Member

    And depression. They were no help in treating either, though. I went through thousands and thousands of dollars of testing.
  14. crissyfamily

    crissyfamily New Member

    and then nothing from MAYO except a $15,000 bill was forthcoming in Oct. of last year...said it appeared i had a virus that caused the recent peripheral neurapathy and tingling and once the virus worked out of my body it would go away as they had seen that happen before...couldn't figure out why I had terrific unbearable sore throat and ringing ears...but did determine that my recent green toenail was a yeast infection and did give me medicine...actually had me take a depression test...doc determined I wasn't depressed (at that time) but just concerned for the welfare of everyone in my family who just got sick...

    said that daughter was not ill...even though she was getting dizzy (NMH)and had sore throat and swollen lymph glands...

    and said my husband was depressed and the breakouts on his feet were barnacles due to old age....hello he was only 48 and did not have them until symptoms started appearing earlier in year.....sent us on our way and in their write up on all of us they just said we all had unspecified symptoms....and gave no diagnosis except for saying that I was a layman reading info on CFIDS and didn't know what I was talking about when I mentioned that I had read a lot on it and thought we may have it....hmmmm.....so sad because I had thought they were one of the top places we could go and I was so very wrong.....they treated us like cattle in a cattle call.....

    crissy
    [This Message was Edited on 07/09/2003]