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Patient Experience: "What Bronllys taught me about pacing."
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help! what kind of docs...and who?

Discussion in 'ME/CFS Doctors' started by RestingInHim, Oct 14, 2010.

  1. RestingInHim

    RestingInHim Realist

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    Riverside, CA, USA
    i've decided to begin a new quest to find help. since i've been ill (1993), i've seen internists, an allergist, a neurologist, 2 rheumatologists, and 3 different physical therapists.
    the allergist diagnosed me, but all his testing and strict diet did no good, but he did put me on ambien which, for a long time, gave great help to my sleeping, after which i improved.
    the rheumatologists were useless.
    the neurologist, who didn't believe in CFS, tested me for peripheral neuropathy, which i have. the ellavil he put me on only gave very temporary relief.
    the physical therapists were great....but also only provided temporary relief...and one, increased fatigue, due to graduated exercise.
    the internists have given me the greatest help (Thank God!)...through medications and suggestions of stretching/yoga. tho i'm not able to do much "on land", the pool is my best friend. unfortunately, we're moving into non-pool weather again.

    i believe it's time for me to seek more involved testing...so i'm asking for your help re: 3 things:
    1) what kind of specialists should i see?
    2) what kind of tests should i seek, i.e. blood; brain; hormones; ??????
    3) what doctors do you know in the Riverside, CA, USA area (Los Angeles/San Diego/Orange County) that take insurance who might help me? (Loma Linda University Medical Center is where i receive most of my medical right now.)

    as some of you may have noticed, i only seem to hit the forums when i'm knocked down. part of my problem...i do too much when i'm feeling better. when i come back...i am so overwhelmed by all the info. i'm grateful to Cort for simplifying the information on the website. part of my frustration has also been computer failures. ugh!

    don't mean to whine, really....just looking for help. i know i've come to the right place.
    thank you in advance!!!

    resting in Him...still...yet a bit anxious at the moment. (not sure that's possible)

  2. George

    George waitin' fer rabbits

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    South Texas
    Hey ya Resting I can't really make any recommendations sorry but I can say that for me I'm choosing to take this time to really rest up. None of the doctors where I live know anything about Me/Cfs. This year should see big changes and I'm for waiting for the paradigm shift before jumping back into the arena with the doctors. Give em a chance to catch up and get educated.

    This year I expect a confirmation of XMRV as a link by April, as causative by September and a rush to approve apligen as a stop gap measure by the end of the year. So for me I'm going to just hang out till then.

    What ever you choose to do I wish you smooth sailing. (grins)
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
  4. caledonia

    caledonia

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    Cincinnati, OH, USA
    Unless you go to the one of the handful of CFS specialists, there is no particular speciality for CFS. I would avoid rheumatologists as you found out.

    Here is another Good Doctor list. There are FM specialists listed there too, so you'll have to pick out the CFS docs.

    http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1131237

    A holistic doc might actually be your best bet.
  5. RestingInHim

    RestingInHim Realist

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    Riverside, CA, USA
    thanks, George. you gave me something to think about. i have read recently that ampligen should be approved soon. along with many others (my guess most of us) this is good news which has been a long time in coming. i am a bit surprised regarding your confidence that XMRV will be proven by April. have an inside track? i hope you're right...not that this news wouldn't be a mixed bag...but at least we could have something more or less definitive (an oxymoron, for sure!).

    sure appreciate your comments!
    resting....waiting...
  6. RestingInHim

    RestingInHim Realist

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    Riverside, CA, USA
    i've heard of acupuncture. what is this, exactly?

    thanks for your reply!
    resting...as i gather info
  7. RestingInHim

    RestingInHim Realist

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    Riverside, CA, USA
    alas...no $$ for this.
  8. RestingInHim

    RestingInHim Realist

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    Riverside, CA, USA
    oops...goofed up the last post....my reply is within your quote, caledonia....but you probablly figured that out!
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    LDN is low dose naltrexone which some people find helpful there is a thread on it on this site.

    Community acupuncture is just a low cost way of getting acupuncture done! Just google these items. FYI
  10. RestingInHim

    RestingInHim Realist

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    Riverside, CA, USA
    Thanks! I'll check it out.
    Going to a neurologist tomorrow I haven't seen before. Going to ask for a brain scan. Is there any validity to that?
  11. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    Resting, you might want to read Dr. Deckoff-Jones' blog post of August 8, on CFS treatment myths as you consider asking for a brain scan. Will the information you get be worth the exposure of your brain to radiation and contrast agents? Will it change or improve your treatment options? I hope your appointment goes well!

    treatingxmrv.blogspot.com/search?updated-max=2010-09-04T16%3A25%3A00-06%3A00&max-results=7

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