Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Simplistic? How to get tests done with no Dr.

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by jann1033, May 1, 2014.

  1. jann1033

    jann1033 Senior Member

    Checked two drs I hoped for, neither take my insurance do back to square one.
    How have you gotten tests run to prove your case with no CFS knowledgeable Dr. Seems like most I've seen are actually hostile toward CFS, you, know, having a nice conversation bring up the "c" word and see t figurative door slammed in the face look.

    I admit, I thought I had this under control and haven't kept up with all the latest but it seems when I go in equipped with info the door just slams even faster
  2. WoolPippi

    WoolPippi Senior Member

    sorry you have a hard time getting the things you want and need :(

    I avoid the terms which cause traditional doctors to roll their eyes (terms like ME, CFS, Adrenal Fatigue, EMF, vaccines)
    Instead I clinically list symptoms and ask them what could be wrong again and again. Once I get blood results that back up my symptoms, I'm in. Levels of VitD, cortisol, thyroid pretty much illustrate my complaints.

    Also, I make sure I look very ill, when seated opposite a doctor. For this I wear yellow and orange tops which make my face positively green and grey. It's a small thing but it works better than informing the dr. this visit is the only time I can come out of the house this week. He needs visuals.

    I have not yet met a dr. who likes the businesslike patient with the folder of notes... so I keep mine in my bag, just a post-it with some keywords so I don't lose the plot myself.

    Nor do they like to be educated on the latest until they know you and the way you operate. What they pretty much see when I/you walk in the door is: "nervous lady, thinks too much, probably hypochondriac. Not obviously ill. Anti-depressants? Gotta get her out of here in 10 minutes, I'm already running late."
    This I know. It's my starting point. I make sure I don't talk too much or shake too much. I try to listen. I keep asking what it could be. And I see the one visit as part of a longer dance with the doctor. There'll be new visits, for fine tuning and deeper digging.
    good luck.
  3. Beyond

    Beyond Juice Me Up, Scotty!!!

    Murcia, Spain
    It should be wayy wayyyy easier for the patient. We have to make a damn strategy and wrestle to get tested and treated, it´s beyond insane.
  4. Sushi

    Sushi Senior Member Albuquerque

    Unfortunately, many of us have to travel to find a doctor who is a specialist or very knowledgeable about ME/CFS. And often that means paying out of pocket too. It is tough, but it is the way it is right now.

    Best wishes,
    SOC likes this.
  5. vamah

    vamah Senior Member

    Washington , DC area
    I had this problem and had to go outside my insurance to a doctor who would ordr tests. Paid for everything out of pocket and it cost a bundle. My advice is not to give too much information. Ask for tests but don't say its for cfs. If doc asks why, say you just want to "rule things out."
    Beyond likes this.

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