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Thread: Mayo Clinic - and frustrated

  1. #21
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    Quote Originally Posted by TAM63 View Post

    He said he used to send a lot of patients to Mayo, and they had terrific experiencs, and got diagnoses. Over the past 3 years, he's seen more come back like my husband did - lots of tests, no diagnoses. He doesn't know what changed in the past 3 years.
    Wondering perhaps if HE has gotten better at difficult diagnoses? And thus is only sender MORE difficult cases? Just supposing of course.
    T7-8 since Feb 2005

  2. #22
    Senior Member zillazangel's Avatar
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    did they test for celiac?

  3. #23
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    Quote Originally Posted by med100 View Post
    Sorry about all the tests. I know what that is like. Anyone rule out Lyme Disease?
    http://arthritis.webmd.com/tc/lyme-disease-symptoms
    You are from New England too aren't you? It seems around here, that is always the first place they look when something unusual is going on.
    T7-8 since Feb 2005

  4. #24
    Quote Originally Posted by zillazangel View Post
    did they test for celiac?
    No the didn't, but I don't believe he really has symptoms that are consistant with celiac. His digestive system is one of the few that works *black humor*

    Quote Originally Posted by sjean423 View Post
    Wondering perhaps if HE has gotten better at difficult diagnoses? And thus is only sender MORE difficult cases? Just supposing of course.
    Sure, anything's possible. This doc is from a pretty good place though and with a very good rep. Several of my husband's other doctors have seemed a bit unimpressed with the results as well.

    I guess my being somewhat less impressed that I thought I would be was not because of the lack of diagnosis (that can happen) but the that there wasn't as much of trying to put the whole picture together. That's what the doctors have commented upon as well.

    Lyme is actually a strong contender for a diagnosis. We discovered that the tests Mayo ran wouldn't have turned up the strains my husband might have. His symptoms actually are consistant with Lyme. Of course, all of those symtoms aren't specific to Lyme, and it could very well be something else as well.

  5. #25
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    Quote Originally Posted by TAM63 View Post
    Sure, anything's possible. This doc is from a pretty good place though and with a very good rep.
    Oh I was never trying to imply that he wasn;t a good doctor. More that he WAS a very good doctor, and was starting to only send very difficult cases out, having a handle on the only somewhat difficult ones.
    T7-8 since Feb 2005

  6. #26
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    Quote Originally Posted by TAM63 View Post
    Lyme is actually a strong contender for a diagnosis. We discovered that the tests Mayo ran wouldn't have turned up the strains my husband might have. His symptoms actually are consistant with Lyme. Of course, all of those symtoms aren't specific to Lyme, and it could very well be something else as well.
    One thing that always seems to cloud diagnoses ..... it is probably more than one thing. Perhaps Lyme AND something else. If you go to the doctor with a broken leg and a strep throat they are never going to come to a conclusion if they are looking for a single diagnosis.
    T7-8 since Feb 2005

  7. #27
    I was at a film festival the first part of the month and saw a documentary about Lyme called "Under Our Skin." The website is Underourskin.com.
    It was unbelievable what people had to go through to get a correct diagnosis.

  8. #28
    Tam63,

    I understand the older gentleman thing, but I'm talking about high-impact trauma from snow sking and kite-boarding accidents along with my being crushed against the wall. Your desciption of the ER visit sounds like supine hypertension right down to the anxious part. Too bad they didn't get the vitals before. In the thread Dr. Young your opinion please You speak twice about blue foot and I get blue feet and hands too (cyanosis) with Cheyne-Stokes. MSA is a Endocrinological rollercoaster ride which explains why symptoms come and go. In the thread Finally saw a nuero post #4 1) He has a wide somewhat stiff gate. There is also something reaccuring in your threads Your blaming all these symptoms on medications; volatile hypertension, orthostatic hypertension, elevated normetanephrine, dyspnea or Cheyne-Stokes etc. If that is not true then? You say he's not deteriorating and I was responding to the fact that your search included MS Sarciodis and other demyelating diseases.

    Joe

  9. #29
    I think they are very well suited for cancer and some other problems, but when it comes the spinal cord injury, there are very few places you can go that actually know a lot about spinal cord injury. I think it just takes luck in finding the right doctor wherever you go. Once you do that, hold on to that doctor.
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

  10. #30
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    Mayo Clinic interestingly has a lot of information about Lyme online:

    http://www.mayoclinic.com/health/lyme-disease/DS00116

    And of course the American Lyme Disease Foundation.

    Complicating the situation is that if my husband got lyme, he would probably have done so abroad - and there are different strains
    Why do you say that if it is Lyme he would have contracted it abroad?
    Altho I didn;t know it until now, there are some high risk areas in Illinois.
    Last edited by sjean423; 03-22-2010 at 09:00 PM.
    T7-8 since Feb 2005

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