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Old 08-12-2008, 08:54 AM   #1
Join Date: Aug 2008
Location: NY
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taureandreamer HB User

For the past two weeks my daughter again has flared up with joint pains. Three years ago her sedrate (sp) I was told was 1500, which (I'm not Doctor) but told that is really high. Off and on she gets joint pains. She does have Scoliosis. (I know that's pretty common). Three years ago they did an ANA test (for Lupus) I was told that was negative, also the one's for Rheumatoid Arthritis were negative. Last week she flared up again with joint pains, knee was swollen. So they redid all the tests. Ok. I was told the tests were negative. The doctor hesitated on the ANA test. And really said nothing about it until I asked. Then 15 minutes of talking about nothing he says "Oh it's negative". When he said it he didn't sound sure.

My daughter has the opportunity to go to the Shriner's Hospital to find out what all this is coming from. Today I called to set up hopefully the first appointment and the lady says "Oh she tested positive for Lupus". WHAT?!?!?! I then explained I was told it was negative, then she became confused and said she would call back.

My grandfather did have Lupus, only person in the family that I know of that had it.

I'm so confused. I'm just wondering if anyone has any suggestions. I know wait to hear back from Shriner's but right now I guess I'm anxious.

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Old 08-12-2008, 11:04 AM   #2
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Re: Confused

Hi & welcome. I'm so sorry that woman blundered so badly. (She needs retraining and a GAG!)

If you read the "sticky posts" (permanent info posts) at the top of the thread list, you'll actually see that there really isn't a single definitive test for lupus! To support a Dx of systemic lupus (SLE), you typically must meet 4 or more of the criteria, but not necessarily all at once. You'll also note some criteria are test results, while others are more like symptoms.

Also, there are other kinds of lupus other than systemic, usually milder, for in which you can meet fewer than 4 (like discoid = DLE, or subacute cutaneous = SCLE, or drug-induced = DILE). These are sometimes called "subsets".

I think you have the right to get copies of your daughter's test results, so why don't you ask for them? It's always a good idea to keep your own personal files.

In your shoes, I'd definitely take her to see the best specialists available. And as to whether it's lupus... I'm just a patient, but I do know that there are other conditions with overlapping symptoms (like juvenile RA, for just one example), so that's another reason to ramp up to the best experts you can.

But even if it is lupus---and I hope it's not---many people do pretty well in this day & age, with proper treatment & checkups. Sometimes lifestyle changes are needed, sun avoidance being a common one.

You could also visit your local library. Dr. Daniel Wallace is one excellent lupus author, and Dr. Robert Lahita is another. It's such a complex subject, and people can say such incorrect things---as you just saw, unfortunately.

I hope this gives you some ideas to work on while you both wait for her next appt. Please hang in there, both of you. I hope you post again when you have time, OK? Meanwhile, best wishes to you both, Vee

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