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    Old 03-21-2005, 02:43 PM   #1
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    wendyk33 HB Userwendyk33 HB User
    Unhappy does my sister have lupus?

    Hi everyone. I think my sister has lupus and so does she but the dr wont' take her seriously. She has extreme photosensitivy. She breaks out in a bumpy rash whenever she gets in the sun. She gets the mouth sores, has arthritis with calcium buildup on her bones. She gets panic attacks. She is depressed and gets sick a lot. She went to physio for her very painful hands and her therapist sent a letter to the dr stating that she thought my sister has lupus and the dr still wouldn't listen. My sister is only 32! The dr sent her for an ana test 2 years ago and it came back negative so he refuses to test her again. Now, she has swelling of her hands and legs. I went up to visit her the other day and her eyes were all swollen up so she went back to the dr and he is finally going to test her for kidney function and diabetes but he still wont' test her ana again. Does this sound like Lupus to any of you guys or do we listen to the dr when he says that there is nothing wrong, it is only in her head. Thanks for listening.


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    Old 03-21-2005, 03:08 PM   #2
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    Re: does my sister have lupus?

    Hiya Wendyk33,

    Sorry to hear that your sister is having so many awful things happening to her. I am not medically trained so I wouldn't hazard a guess at her symptoms in a diagnostic way.

    All I can say it that there are things going on with her that might be pointing to some type of autoimmune illness.

    I'm sorry, this should be my siganture tune here I say it that often, but tell her to throw the present doctor as far as is possible. Get herself a doctor who is going to treat her with respect. I know it's easier said than done but the longer she puts up with his rudeness and insensitivity the more likely she is to go really downhill with her problems. Her pain is certainly not in her head, how dare he say that. Even if it is not lupus, there is something most definitely wrong. Please try to get another doctor.

    I do so hope that she finds somebody soon to listen to her. May I say that you are such a caring sister and I hope you too can get some answers soon. Unfortunately, illness is no respecter of age, and lupus certainly isn't.

    Come back here thought at any time, there will always be somebody to answer questions for you.

    Take care and big gentle ((((((hugs)))))) to your sister.


    Last edited by goldenwings; 03-21-2005 at 04:06 PM.

    Old 03-21-2005, 03:47 PM   #3
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    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: does my sister have lupus?

    Dear Wendyk33,

    I am certainly not a doctor and have no medical training whatsoever. But based on my own experience and reading, I certainly reacted to what you wrote. I am ANA-negative but have a form of lupus that requires treatment, so here are a couple of quick thoughts.

    (1) The main lupus is SLE = systemic lupus. Even in it, a few percent of cases are ANA-negative. You could use your browser to look up "Ro lupus".

    (2) Then there are the "subsets".
    (a) The milder one is DLE = discoid lupus. Its main feature are discoid-shaped scarring and depigmenting skin lesions. In it, only about 50% of cases are ANA-positive.
    (b) The intermediate subset is SCLE = subacute cutaneous LE, in which symptoms can cover the entire SLE range. Many patients have at least 4 of the "4 of 11" diagnostic criteria at time of DX; but the worst symptoms (kidney involvement & CNS problems) occur statistically less frequently than in full-blown SLE. There are two non-depigmenting, nonscarring skin rashes seen in SCLE. One is "annular", meaning ringlike, but it often starts as large reddish bumps looking like big mosquito bites. The other rash is papulosquamous, meaning lots of smallish raised papules. ANA is positive in only 70%, or so, of patients. Anti-Ro is also positive in only 70% or so.

    Why I know (kind of!) these things: I was Dx'ed with SCLE after over eight years of the annular form of rash, also having fatigue, migraine-like ehadaches, IBS, irritable bladder, stones, joint pain, anemia, episodic fluid retention, etc. It took a Manhattan teaching hospital rheumie to make the call---and he also referred me for one last skin biopsy to a research dermatopathologist (a dermie who does his own labwork). The local dermies, rheumies, urologists (ETC.!) had no idea what I had, even though my skin biopsies came back all along with very clear & compelling results (per the d/p who finally saw me).

    (3) My understanding is that ANA can indeed become positive. There may be no real need to keep testing once it's positive---but not, in my little mind, when it's negative. (That's my non-medical understanding only, though.)

    (4) Other folks I've seen: I know only one woman personally who was Dx'ed with SCLE. She was in worse shape than I was but got a Dx quicker. Her ANA finally turned positive (Mine has not.) Worse, though, her antiphospholipid antibodies test also turned positive; and she had multiple joint surgeries to remove some sort of buildup from her shoulder joints.

    I hope you post again with any questions you may have & with further updates. Sometimes it takes a true specialist to recognize problems that are lesser known... I'm living proof of that. Wishing your sister & you both the best, from Vee (on Plaquenil & rash free for 5 years now)

    Old 03-21-2005, 03:59 PM   #4
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    Re: does my sister have lupus?

    I also think your sister needs to see another Dr. To check the ANA requires only a blood test and for her Dr. to refuse to order this in ridiculous. She defintely has many lupus like sometimes - there is something going on and whether it is lupus or some other autoimmune she needs to find out and get on a course of treatment to help her get some relief. She is lucky to have you watching out for her. Good luck.

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