Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Pain kept this young woman from eating for 5 years, and doctors didn’t know why

Discussion in 'Other Health News and Research' started by Kyla, Sep 28, 2016.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    https://www.washingtonpost.com/nati...f9-11e6-9705-23e51a2f424d_story.html#comments

    Another rare-disease-patient-misdiagnosed-as-psychiatric story.

    excerpt:
     
    merylg, leela, Gingergrrl and 4 others like this.
  2. Effi

    Effi Senior Member

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    What a nightmare... :(
     
    merylg and leela like this.
  3. Cheesus

    Cheesus Senior Member

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    I read a book of short horror stories when I was little, and I've always remembered one that takes place in a hospital. A kid had gone in for some routine surgery, but someone else's chart was accidentally placed on his bed and they mistake him for the other patient. As he is being wheeled in to surgery he discovers they're going to amputate his arm. He starts trying to explain to them what's happening and they have the wrong guy, but they simply tell him "They told us you would say that." The story ends with him screaming and pleading with them to believe him as they put him under anaesthetic.

    This kind of thing always reminds me of that story: "And the more I tried to convince them, the crazier I sounded." It terrified me then and it terrifies me now.
     
  4. kangaSue

    kangaSue Senior Member

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    I've been down the same path myself but had to do all the leg work myself and yes, I got the "it's all in your head, go see the psychiatrist" routine (who proclaimed me to be of sound mind at least). Symptoms were the same as this account but the diagnosis was a different one. Mine was eventually found to be Non-occlusive Mesenteric Ischemia, a form of Chronic Mesenteric Ischemia. No happy ending though as there is no surgical fix for it!

    I have had a new glimmer of hope however. I got so pissed off with my motility specialist's decision that there is nothing further they can offer that I applied for copies of all my GI tests in recent years only to discover that this "head case" can see a glaring oversight that the "medical professionals" had missed. All signs point to me maybe having Superior Mesentery Artery (SMA) Syndrome (reduced angulation of the SMA/Aorta junction) which does have a surgical fix. Comes with a big catch though, there's only about a 50% chance that it will cure me of gastroparesis.
     

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