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Thread: Hi, new here and kind of in shock!

  1. #1
    Join Date
    Jan 2012
    Thanked 0 Times in 0 Posts

    Default Hi, new here and kind of in shock!

    About 20 years ago I started getting sick, miserably sick. Somewhere during this 3 year illness, Lupus was brought up, tested, and I was told I probably didn't have it as one of the main tests for it wasn't quite positive enough for a firm diagnosis.

    My PCP recently put information online, you create an account and can access your medical history. Well, I almost dropped to the floor when I saw that she has me listed as having Systemic Lupus Erythematosus.

    I will say that the past 15 years, I have not suffered the debilitating effects that I had during that first incident, but I have however, had many symptoms of illness come and go throughout all these years.

    I can't understand why I wasn't told that I had this illness!

    Maybe someone here with more experience can shed some light for me!

    Thank you.

  2. #2
    Join Date
    Mar 2011
    pinjarra, western australia
    Blog Entries
    Thanked 1,844 Times in 1,279 Posts


    many doctors do not know enough about lupus.

    if it is outside of there experience, they do not know enough to give a diagnosis.
    my primary care doctor has only personally seen 2 cases of lupus in his career.
    the first was a staff member he had a couple of years ago.
    when we were talking about my care......
    he started reading all he could.
    i am told this is unusual for doctors.
    i know he cares, he will find out anything he does not know.
    that is why he is my primary now.

    i know previous doctors who could only treat the usual coughs and colds.
    they would pass patients to other doctors, if they didnt know what to do.

    this may not be the same in your case.......
    but it is my history.

  3. #3
    Join Date
    Nov 2008
    hervey bay queensland australia
    Thanked 209 Times in 178 Posts


    welcome to whl i agree with steve i have had the same problem many doctors do not know much about lupus and since there is not a specific tests for it . they base it on criteria and many symptoms. my suggestion to you is keep diary of symptoms and any questions you have doctors so you go prepared.

  4. #4
    Join Date
    May 2007
    Seaside, Ca.
    Thanked 948 Times in 732 Posts


    Welcome to WHL. I'm surprised that your doctor never sent you to a rheumatologist. It's good that you are now armed with this knowledge, though.
    You've been lucky to have such mild symptoms, but should any get worse, you will know to seek out the opinion of a rheumy and get the right medications.

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