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Need comprehensive diagnostic team for mystery illness.

Discussion in 'Other Health News and Research' started by CallieAndToby, Jan 7, 2013.

  1. CallieAndToby

    CallieAndToby Senior Member

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  2. Valentijn

    Valentijn WE ARE KINA

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    To start with, I'd stay the hell away from the Mayo clinic. They're total morons when it comes to "medically unexplained symptoms".

    Generally speaking, quite a few of us end up acting as our own diagnosticians. So you could try to find a cooperative local doctor that will run the tests you want, and do your own research.

    People here also might have suggestions if you were to post what has been tested and tried, and any abnormal results from that.
     
    heapsreal likes this.
  3. CallieAndToby

    CallieAndToby Senior Member

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    Yea I was young when I was sent to mayo, maybe 17, so of course didn't have a clue what was wrong with me and neither did they and I trusted doctors.

    Shands is must worse though - in gainesville. The staff are incredibly rude and just plain stupid and the doctors don't have a clue so they like to push ECT and cymbalta. They will also refuse to see you if they see your case is too complex. Just an FYI.
     
  4. ukxmrv

    ukxmrv Senior Member

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    Which CFS doctors have you seen?
     
    justy likes this.
  5. adreno

    adreno PR activist

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    Calling Dr. House...
     
  6. CallieAndToby

    CallieAndToby Senior Member

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    I don't know that I should say. I don't have money or health to see another and they usually have tunnel focus on one specific area. Hint: comforting the patient and immune system.
     
    ukxmrv likes this.
  7. Sushi

    Sushi Senior Member Albuquerque

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    I know 3 people who have gone there, and for each one it has been a disaster! They actually did NOT work together, were not willing to look at things that are known to be involved with ME/CFS and the patients came away harmed rather than helped.

    Sushi
     
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  8. CallieAndToby

    CallieAndToby Senior Member

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    Thanks Sushi. I appreciate your honesty. This is good information and will save me from the harm you speak of. Funny, I thought for sure if they got a CFS patient they could figure it out for all of the rest of us!!! Sigh. Thanks for this information.
     
  9. Valentijn

    Valentijn WE ARE KINA

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    I think people diagnosing rare/difficult diseases are rather limited in that they are diagnosing known diseases based on known signs/tests/etc. They're not really researchers, so if the disease isn't already known about to some extent, they won't be much use.

    Hence Dr House wouldn't be much help unless it turns out we have "Exotic Disease A, B, or C", versus "Random Cluster of Symptoms that Usually Mean ME/CFS". No known etiology + no known treatment = no interest. They want problems that they can solve.
     
    MishMash likes this.
  10. snowathlete

    snowathlete

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    Sorry to hear that you havent had much luck so far.

    I think it's difficult because we have a complicated illness, as you know and doctors specializing in ME/CFS tend to focus on the area they prefer (for a variety of reasons), but the majority are likely looking in the wrong area, and even if you have the right area, there is still a lot of hit and miss because there is a lot we dont know.

    Unfortunately, getting competent people to work together on something like this is generally very difficult, especially people from different areas of expertise and the more people you add to the group the harder it gets to direct. It's easier if you have one very good leader with a broad range of skills and experience, and can offer the right incentives to motivate a team of people like this, but thats not an easy situation to construct in situations like this.

    I think you can improve your chances by directing things yourself as much as you can, try and steer your treatment in the direction you think is most likely to give results, but this relys on you being able to do a lot of your own homework and focus on the facts as they relate to you specifically. And of course, a bit of luck wouldnt hurt, so i hope you get some soon.
     
    CallieAndToby likes this.
  11. CallieAndToby

    CallieAndToby Senior Member

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    Agree here. I definitely need a "leader" (I cannot do any of it anymore).
     
  12. ukxmrv

    ukxmrv Senior Member

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    A lot of us are in the same boat I think Callieandtoby.

    We dream of a doctor or team of doctors that would be able to pinpoint exactly what is wrong with us and how to fix it. Some of us find parts of the puzzle. Every now and then someone finds their answer or at least what looks like the right path to follow. Seen so many people though who think that they are better just to relapse badly.
     
  13. CallieAndToby

    CallieAndToby Senior Member

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    Yes. Understand. It was worth finding out about Dr. Gahl's team though b/c I was in the process of being referred to his program.

    I also have 2 friends that are very sick, one is in and out of the hospital, and neither have a diagnosis but don't fit M.E./CFS, so that was partly my motive for asking as well.
     

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