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Thread: My lupus panel was neg. now what?

  1. #1
    Join Date
    Feb 2009
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    Default My lupus panel was neg. now what?

    I'm seeing a rhematologist on the 23rd of feb. and my mom is going with me. Right now I'm treating my rash with steroid creams and it helps a bit.

    My question is does a lupus rash become less annoying with steroid creams? Because mine is getting a little better with use, but when the use is stopped rash returns quickly.

    What should I expect at the rhematologist? My internal specialist is the one that put in the order for a lupus test and I've also been to a dermatologist. Both seems to think I have some sort of auto immune disorder.. they just aren't sure what.

    What should I expect to happen at the dr's office when I see a rhematologist?

    These are my symptoms, do they seem like lupus to you, if not what do they seems like?

    Rash that is primarily under my eyes and on upper cheeks, also on inner elbow


    Always tired or dragging

    Light nausea and stomach pain

    Past diagnosis of Anemia (blood test along with always being tired)

    Problems with painful periods and irregularity..

    Unreasonably cold or hot often

    Bowel movements
    -severe constipation
    -blood with bowel movements
    -Oct 31st small bowel obstruction

    Protein and bacteria in urine

    Swollen ankles and lower legs

    Pain in lower back (right side mostly)

    Dr's have thought possible kidney problems

    Random night sweats and fever

    Mother has fibromyalgia and raenoids

    Achy joints such as knees and elbows and then sore and achy neck and back (especially around the kidney)

  2. #2
    Join Date
    Dec 2008
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    Thanked 81 Times in 70 Posts


    hi heather,

    you are obviously a well-educated young lady looking for the answer to "what is up with me?" Congrats on your mature approach to this search.

    At the rheumy, he/she will ask you questions about symptoms. Where I messed up, and I want to warn you whenever they ask you about a symptom (ex. do you have mouth sores?) remember to think back and answer yes even if you don't presently have the symptom but have in the past. Lupus attacks are intermittent, and move around. I remember early on in my diagnosis process, I only reponded yes if the symptoms were present at that time. I did not realize that the symptoms come and go. I also did not realize that the mouth sores associated with lupus are often small, don't burn, etc. I thought a mouth sore must be this big gross growth inside of my mouth.

    I was able to gain a lot information about symptoms by exploring around this forum. I thought back as far as possible, made a simple time/symptom chart, and gave to my rheumy. She was glad that I did this, and it seemed to help her.

    After asking symptom questions, you should get a brief physical, where the dr. will check various parts of your body for pain. I have pain in my knees, ankles, wrists, etc. but it is not in the joint. My pain is in the soft tissue....try to be very specific when responding to questions about pain.

    The dr. will then collect blood and urine samples, and, in most cases, will schedule another appointment to go over test results. My dr. likes to schedule 3 month appointments. I usually request 2 months (especially if on new med) and she is happy to accommodate me.

    I am glad you are taking your Mom.....sounds like a good team (I also have fibromyalgia)

    take care and keep up the good work for yourself,

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