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Hi & welcome. I'll keep this quick, because I just want to point you to a few things you can read. I hope you'll post more soon.

There are three "sticky posts" (permanent info posts) at the top of the thread list. One has the Am. College of Rheumatology criteria for diagnosing & classifying systemic lupus (SLE). You generally must meet at least 4* of the 11, but not necessarily all at once. (*And there are lesser forms, called "subsets", for which you may meet fewer than 4 criteria.)

You'll see that only some of these criteria are tests. There really is no single test for lupus, actually. Only TWO autoantibodies are considered VERY specific to lupus, anti-ds-DNA and anti-Sm; but there are at least 14 or more other antibodies/substances also seen in lupus (like anti-Ro, anti-La, anti-RNP, RF, antihistone, ETC.) FYI, in his hardcover, which is available in most libraries, Dr. Daniel Wallace covers these concepts at great length, in patient-friendly language. Also look for Dr. Robert Lahita, another helpful author.

Another "sticky post" discusses antiphospholipid syndrome (APS), a blood clotting disorder that is implicated in blood clots, headaches, nosebleeds, etc. APS is seen in some lupus patients, but people sometimes have APS "standalone", without lupus. FYI, Dr. Wallace also covers APS in the hardcover I mentioned.

And you could ask for copies of all your bloodwork, to see for what thing/things you tested positive.

No prudent doctor treats a patient for lupus until SURE the patient has it. On the other hand, my own experience was that my local doctors, including multiple specialists, didn't recognize the variant kind I have. So I think your goals should be to read and to ask questions, and to make sure your main doctor is a Board-certified RHEUMATOLOGIST.

I hope something above is useful. I hope you keep posting here & that others chip in soon. Bye for now, with best wishes, Vee





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