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Thread: "Undiagnosed Autoimmune Disorder" I think it's Lupus

  1. #11
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    lol Phyllis you actually made me laugh out loud....

    Terri...Rob says it all...this asshole needs to be ejected from your life...I think your very health depends on it..what a screwup.
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  2. #12
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    My doctor is a plain old family physician, but I have seen a rheumy he just did a Sjogrens check and said too bad...called my mom a hypochondriac...since she is symptomatic too. Probably told her I was one too lol. I just went in to the doc again. Perioral dermatitis for the scaly face rash. She showed me pics...it looks right. We discussed putting me on prednisone, even though I have no diagnosis...we'll think about it if nothing better comes up. Had a cbc and esr...don't have the results yet...will post though.

    And everyone is right hon...your dirty glass doctor isn't worth your money time or health.

  3. #13
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    Default Pityriasis Rosea - the christmas tree rash.

    Hey I had Pityriasis Rosea complicated by MRSA and what a great time trying to diagnose that - After steroid treatment, many swabs and many different treatments for both (from fungal to anti histamine and antibiotic) the Rosea stayed and I finally found details of it online and took the printout to doctor who was then able to confirm. You realise the medical profession is as much at sea as you are sometimes. Like the internet said 12 weeks later the thing disappeared.

    They called it an opportunistic benign kind of infection that comes after a respiratory infection but I also felt it was the beginning of all my worries - IT came on after the 8 week chest virus from hell and from that moment on - it was a downward spiral - but now I am in some kind of recovery mode - so hang on in there. Although it has taken a year of feeling like I was going down hill - the depression of not knowing there was something wrong is also the other factor to deal with. Once you figure you have something and ignore medical suggestions that you don't you can start managing your illness.

  4. #14
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    Got my blood results back...cbc and esr were NORMAL...go figure. Nothing ever shows up. Oh well...I shall not give up hope! lol sorry I'm pretty tired.

  5. #15
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    No I have had some normal results too...sometimes this illness can scew the results, I think...like are you on any prednisone? that can change things for you, too.
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  6. #16
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    No I'm only on Naproxen. Since I'm not "officially diagnosed" I can't be treated.

  7. #17
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    Something I don't understand. Why do we have to get another doctor to give us permission to go see a different doctor. We pay good money and are over charged all the time then they insult us with their crap.

    We should be able to make an appointment with any doctor we want to see. Even if we just want answers to questions. What makes them think they are above us in the chain of life. Are they taught in the first year of med school that they are gods and are to be treated as such.

    I know from my visit to the rheumy Thursday that if he treats me the same on my next visit the cowboy in me will come out and I'll kick his butt all over his office. With the VA I get a choice of one rheumy, thats all they have, so he will listen to me from now own.

    Shut up David


    Sitting on the beach drinking lemonade.
    Fair wind and following seas.
    David

  8. #18
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    hi kohlfrog,

    it is confusing, but yes test results can bounce from normal to positive. my rheumy said she does not put 100% trust in blood tests because of this. the meds, and whether you are in a flare, can make the results vary. also, as we wll know, we encounter different problems with organs, go to a specialist who does tests, and tests come back normal....it it the life with lupus, not whether our tests are always positive.

    Also, sometimes there is a variance in labs. i ran into a discrepancy between drs. One said my kidneys were in trouble, and another said no they weren't. When i stood my ground about an explanation, the dr. revealed that the labs differed in their ratings for the normal range.....WHAT? normal should be normal, and positive should be positive.

    my rheumy told me not to let people deminish what was happening in my body just because their labs did not register a problem.....this is lupus, and it does what it wants.

    so sorry you are going through this, just remember to keep your head high,
    Phyllis

    share a smile today

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