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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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visit to mayo clinic

Discussion in 'ME/CFS Doctors' started by perovyscus, Feb 27, 2013.

  1. perovyscus

    perovyscus

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    i just got out of an appt with dr josephs
    a neurologist nice
    getting eeg
    general blood
    neuropsych
    brain mri
    i will be updating at
    http://cfsmayoclinic.blogspot.com
    SpecialK82 likes this.
  2. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    Looking forward to updates ... I wonder how hard they're pushing ME/CFS as a psych disorder once they think they've ruled out the known alternatives.
    SanDiego#1 likes this.
  3. SanDiego#1

    SanDiego#1 SanDiego#1

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    SouthEast USA

    Val Loved the last 2 paragraphs on Mayo Clinic visit. Still laughing. SOOOOOOOO True!!!

    Keep us Posted.

    San Diego #1
  4. jstefl

    jstefl Senior Member

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    Brookfield, Wisconsin
    I hope that you have better luck there than I did.
  5. ukxmrv

    ukxmrv Senior Member

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    London
    They have such a bad reputation. The Neuropsych tests will be to pin your symptoms into that area I guess? The results will be "nothing physically wrong with you" but you are depressed.
    SanDiego#1 likes this.
  6. Hugocfs

    Hugocfs Senior Member

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    I became sick in September 2009. After seeing a chiropractor/neurologist, two family doctors, two neurologists, two endocrinologists, a pulminologist, and a cardiologist; I ended up at the Mayo Clinic in Jacksonville not knowing what was wrong with me. At least the internist there (Pedro Malavet) gave me a diagnosis of chronic fatigue syndrome. None of the other doctors prior to that even mentioned it as a possibility. Also partially to his credit, he emphasized graded exercise therapy and did not even recommend cognitive behavoiral therapy. Needless to say, GET didn't work for me. Clearly the Mayo Clinic follows the British model, and they are very behind the times. If you know that you have chronic fatigue syndrome, don't bother going there. Stay away as they cannot help you. They put no emphasis or focus on it.
  7. Hugocfs

    Hugocfs Senior Member

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    Ps. Fortunately I didn't have a neuropysch. evaluation when I was there. If you are thinking you might need to make a long term disability claim in the future, it may not be in your interest to submit to it.
  8. SpecialK82

    SpecialK82 Senior Member

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    USA
    Loved your first entry :) Thanks for writing and keeping us all up-to-date. Looking forward to hearing your experiences. It's a shame that the Mayo Clinic and the Cleveland Clinic don't seem to be up on the latest in this illness. I wonder if the ME/CFS Community would make an effort to especially invite these doctors to good ME/CFS conferences, would they would come?
  9. perovyscus

    perovyscus

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    Depression was diagnosed via survey testing, so essentially just to echo everyone that's what to expect. I got a rare EEG, which was part of my goal, which could have easily been done locally at 1/20th the cost. No treatment recommendations were offered. Just adding to the marvelous pool of anecdotal data.

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