Hopeful4........Huge thank you!

Discussion in 'Fibromyalgia Main Forum' started by orachel, Sep 12, 2005.

  1. orachel

    orachel New Member

    For taking the time to give me info on FCC lab work! I never imagined I'd be able to give my doc that detail. Thanks soooo much, and keep us updated about how you're feeling.
    Rachel
  2. hopeful4

    hopeful4 New Member

    Sorry I'm so late in answering you, I missed this post somehow. All I can say is that without the help from people here (esp. wishingonastar, donp1957, sarasmom, jillian40, samantha and others) I would not have chosen to go to the FFC. So I'm just paying it forward and hoping that people like you can be helped, too.

    Hugs to you,
    Hopeful4
  3. ldbgcoleman

    ldbgcoleman New Member

    Did your Dr agree to do the testing and treat you accordingly?? You may have posted it and I missed it. Just curious! Lynn
  4. orachel

    orachel New Member

    Nope, that doc turned out to be a wank similar to my last pcp...this is the 2nd doc whos basically said "there's nothing I can do for you as you're not responding to the meds I've given you...you'll just have to live with excruciating pain for the rest of your life, regardless of the limitations it gives you"...basically the big brush off. Won't treat my pain at all.

    I am in the process of retaining an attorney to fight unum provident, whos trying to get me evaluated at cleveland clinic...but the doc I spoke to there seemed to have the basic "AMA Party Line". I've been reading a lot of Starlanyl lately (Fibromyalgia advocate...if you've never read it RUN and get from library...changed my VIEWS on so much!!!). Basically, the american medical association is so far behind on their fm/cfids/mps research (lucky for me, I have all three! lol) that they believe these to all be same disorder....totally false, according to all of the leading researchers in the field. They also set the standard for no "narcotic" pain meds regardless of the severity of our situation. I took my godmother and my husband into doc today...both of which verified what I'd told him in first 2 visits. My pain is so severe that I am VIRTUALLY nonfunctional, period. Cannot even wash myself or drive much of the time.

    No, as for the tests, as far as he's concerned, I've been fully diagnosed (I've had basic bloodwork, an abdominal xray, and a cat scan without contrast....). He in no way shape or form understands that fm patients require extremely specific testing to diagnose hypoglycemia, lupus, etc...basic "bloodwork" just flat out misses 90% of our major underlying probs. Quite frankly, based on what I've been reading lately, I'm very concerned about lyme...apparently there is a form of neuro lyme that is very difficult to detect, and very severe....

    I'm at a total loss. But I now know the first question to ask a doctor is if they follow the "AMA" line of thinking on FM/CFS/MPS...if they do, I run the other way. The AMA is more antiquated than the SS administration on this research! LOL

    I'm gonna eventually have to get myself to ffc, or mayo, or some other mucho mucho diagnostic situation in order to figure out whats going on with me.

    But seriously, with that particular Devin Starlanyl...the advocate, there is SO much specific info that I had no idea of before...and she's not the only one with these ideas. Most of the major researchers into our illnesses seem to feel exactly the same way (Pain relief is MANDATORY in order for us to begin to participate in our wellness!) and the AMA feels the exact opposite.

    I'm going to keep looking for another doc who's willing to "learn" with me, and basically utilize some of my research or do their own into the most accurate, recent research...10 yr old ama info is doing nothing but making me dr phobic and ticked off at the system! LOL

    Talk to you soon!
    Rachel
    [This Message was Edited on 10/10/2005]