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Dear Simmons, I'm having a slight PC problem, so please forgive that first weird post I did. I just tried something else & now am trying to get a meaningful post back to you. Here goes!

There's a "sticky post" at the front of the Board with the criteria for Dx'ing systemic lupus. A person must meet any 4 of the 11 to be Dx'ed, at some time, meaning not all at once. Some seem to "weigh" more than others.

Having either of the two autoantibodies listed, anti-ds-DNA or anti-Sm, will weigh an awful lot with some doctors. Why? Because these two antibodies are VERY HIGHLY SPECIFIC to lupus, meaning are not seen in other diseases.

Some drs. will thus Dx immediately. Others, esp. if the levels are low, will try to get a repeat test result. Some drs. seem to want to verify that at least 3 *other* criteria have been met.

I base this "take" on all the stories I've read on the Board here, as well as on personal experience. Because lupus has so many symptoms and is so varied, Dx'ing it seems to be an art, not a science, alas.

I've known personally and read of people who were Dx'ed on one try, maybe because they were so "classic". Classic for lupus would be a butterfly rash, protein in the urine, positive ANA, and positive anti-ds-DNA or anti-Sm.

Reasons probably vary for why others are in limbo much longer. Milder symptoms. Being tested while not in a flare. No butterfly rash. Specific antibody tests not ordered by dr. Quality of labwork. Symptoms very subtle (not the classic ones). Dr. hasn't kept a good count on criteria met over a lifetime, because he/she didn't take a thorough lifetime medical history, or didn't write down all patient said. Some other disease co-exists and gets all the attention. Being treated for wrong disease entirely. Dt. not recognizing a variant presentation (that's what happened to me).

In some people, the trajectory is so slow, also. I had subacute symptoms from childhood, with each decade bringing more problems on. Even with 8 years of arm/torso rashes, none of my drs. suggested I might have lupus; it was a hospital radiologist doing a kidney function test who let the cat out of the bag. Moral: a dr. may suspect but not mention the word.

Anyway, as to prognosis: many people remain mild. And even those who have major organ involvement do so much better today than in past decades.

Maybe it would help your wife and you to browse one or more of the lupus books found in most libraries and bookstores. Internet info is briefer by definition and focuses, I think, on the worst problems (which it should, actually). But in comprehensive books, you can see all the things that DON'T apply, that HAVEN'T happened, and that can help you gain perspective. Two authors come to mind: Dr. Daniel Wallace, and Dr. Robert Lahita.

I hope rheumie #2 helps you get a hold on what's going on, and I hope you two keep posting here. The people here are so kind, and so varied, too, in what they've experienced and can share. Best wishes, from Vee





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