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Teresacar, You seemingly have a few things going on that unfortunately *probably* don't shout out a single answer. Obviously, I'm just a patient; but based on what I've read & experienced, here are some reasons lupus is so hard to diagnose.

* There's no single test (or tests) to prove or disprove lupus. Instead, the systemic form is Dx'ed by meeting at least 4 of 11 established criteria (see the "sticky post" at the top of the thread list), but not necessarily all at once. This means you could meet one criterion, in, say, 2008---then another in 2009, etc. Picture checking each off in indelible ink.

* Symptoms overlap MANY other diseases & conditions. Take arthritis, for example: there are over 100 kinds of arthritis, so doctors can't look at someone with arthritic pain & immediately suspect lupus as the best candidate.

* Symptoms & test results flare & recede. Why? Because in lupus, the immune system is both aberrant & overactive. It may work well for months at a time. Then you're exposed to something that triggers a meaningful immune response---and BAM!---you're in a flare.

* Lupus ranges from mild to life-threatening, and it may affect a huge range of organ systems & functions. People with the most "classic" symptoms & test results are more quickly recognized by doctors. The most classic things are malar (butterfly) rash, high ANA (1: 1280 or higher), high anti-ds-DNA or anti-Sm autoantibodies, with protein in urine: that would spell possible LUPUS to even an unimaginative doctor!

* In addition to SLE, there are lesser variants, like DLE, SCLE, and DILE. And within each variant, symptoms, test results, and severity may vary.

* Sadly, I believe because women get lupus far more frequently than men, doctors far too often ascribe complaints to neurosis, depression, etc. Even women doctors tend to do this, was my experience.

And this list is far from complete! I once read that in med school, they used to teach students that "To know lupus is to know medicine"---meaning lupus is considered a huge challenge to a doctor's knowledge & diagnostic skills. To read more, look for those great books in your local library. Best wishes, Vee

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