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Thread: Mayo Clinic - and frustrated

  1. #1

    Mayo Clinic - and frustrated

    Well I've kept quiet - dunno, wierd me, didn't want to jinx anything. But we've been up at Mayo Clinic for 2 1/2 weeks. What a marathon.

    We came up here to try to figure out the myriad symptoms my husband has - the referring docs letter said "seek a unifying diagnosis".

    Nope - no diagnosis. Zillions of tests - but going home undiagnosed.

    Mayo is certainly an... interesting... experience. It's an amazing machine - I'm sure no one in the world is better at running tests. High tech tests, and lots of them. And the people who are running the tests are the nicest personnel on earth. But they do things their way, and aren't used to people who want to participate in their care or ask questions. You're told to go for a test, and not even told quite what the test is. And trying to find out is quite an adventure. You meet your primary doctor once - and generally don't ever get to speak to him again until he's sending you home. Interesting relationship.

    What did not happen though, which I'd expected, was Mayo being determined to make a diagnosis. The primary doc started off by saying they probably wouldn't. So in each specialty area, one person (maybe even a resident) took a look - said "I dunno" and on we went. Most of them did not seem disturbed by not having an explanation. Although, they generally did run a bunch of tests.

    One department did do what I thought Mayo would - have a whole pack of docs look at him, have a conference, discuss things - but the rest didn't. One hematologist really took an interest, and tried hard.

    They did find one thing - after our insistance that they look at his ears/hearing - part of my husband's balance problems are a bunch of fluid and eustachian tube dysfunction. So he now has tubes in his ears. Aaaargh - go to Mayo to put tubes in ears. What really frosts me is that I've been complaining about a finding of mastoiditis on MRI since last summer - which the doctors all blew off as not significant. Yes it was. Grr.

    They also did actually pay attention to the anemia he's had off and on for years, and the elevated inflammatory markers. No one at home has ever mentioned the anemia (although we can see it on labs) and they were somewhat unimpressed by the inflammatory markers. Mayo was interested - and says he has anemia of chronic disease, and some chronic inflammatory disease - but they don't know what. So no treatment possible. Just wait and see what happens.

    Not sure what to do from here - nothing much I guess. Wait and see.

    Sigh.

  2. #2
    Hi TAM, just a quick question. What symptoms does your husband have if you dont mind me asking.

  3. #3
    Senior Member Foolish Old's Avatar
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    Most of us with chronic conditions can relate to your frustration. Your experience is all too common. Our vaunted medical system has done a great job of developing advanced (and expensive) diagnostics. Now all we need is a meaningful way to use the data that in many cases seems to have been gathered without a clear medical reason. I always ask what specifically a test can reveal and how the results will be used to decide the treatment decision. Cogent answers are far too rare. Most of us have had so many tests that didn't seem to be of any use in determining our treatment. I suspect that many times the results aren't even looked at by the ordering doc unless they scream for attention.
    Foolish

    "We have met the enemy and he is us."-POGO.

    "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

    "Dream big, you might never wake up!"- Snoop Dogg

  4. #4
    Quote Originally Posted by Fly_Pelican_Fly View Post
    Hi TAM, just a quick question. What symptoms does your husband have if you dont mind me asking.
    He has symptoms from head to toe. Some stuff that looks neuro, sometimes cardiac (but that's probably secondary), fatigue, anemia, pain, sometimes joint problems, etc. There is some sort of systemic illness, that can't be found at present.

  5. #5
    Quote Originally Posted by Foolish Old View Post
    Most of us with chronic conditions can relate to your frustration. Your experience is all too common. Our vaunted medical system has done a great job of developing advanced (and expensive) diagnostics. Now all we need is a meaningful way to use the data that in many cases seems to have been gathered without a clear medical reason. I always ask what specifically a test can reveal and how the results will be used to decide the treatment decision. Cogent answers are far too rare. Most of us have had so many tests that didn't seem to be of any use in determining our treatment. I suspect that many times the results aren't even looked at by the ordering doc unless they scream for attention.
    I couldn't agree with you more. I've never seen so many tests in my life (over 120 blood tests alone!). But the things that were found were only because we pushed to have them investigated. Left to their own devices, even Mayo wasn't investigating the anemia.

    What we need is a really good doc to take an interest, and really look at the patterns of what has happened, what meds were involved when (because some things I am sure are due to side effects), etc. We've been able to figure out some of it, but not the root cause.

    We need Dr. House lol. Actually, a dermatologist there (of all specialties!) has taken an interest also, and listened, and who knows, maybe he'll come up with something.

    But yes, my impression was too much technology, and too little old-fashioned thought. We'll see I guess.

  6. #6
    Woah, it must be very frustrating to not have a diagnosis. I feel for you guys as I know someone that is going through a spinal injury which is still yet to be diagnosed.

    Just out of interest, has you husband been tested for tropical diseases? Have you been anywhere "tropical" in the last few years?

  7. #7
    Sorry about all the tests. I know what that is like. Anyone rule out Lyme Disease?
    http://arthritis.webmd.com/tc/lyme-disease-symptoms

  8. #8
    Quote Originally Posted by TAM63 View Post

    We need Dr. House lol.
    It could be lupus... wait it is never lupus


    (dont mean to make fun, I hope your husband gets better.)

  9. #9
    Senior Member Mona~on~wheels's Avatar
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    Wow Tam sorry your husband & you are going through this.
    It has to be so frustrating. You'd think the Mayo clinic could figure it out.
    I'm assuming it's not life threatening. I hope you can find peace not knowing.
    God bless both of you.

  10. #10
    Did they make you repeat every test done already? That's what they did to my Dad. And he was already diagnosed! That said, I think they saved his life. He refused radiation in KS, went to Mayo for all his treatments for esophageal cancer. It was a good move, they really do excel at that type of cancer.

    It's all hit or miss, so damned frustrating. I'm on doctor strike myself but will have to cave soon.

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