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Old 11-26-2012, 05:34 AM   #3
VeeJ VeeJ is offline
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Re: is it possible i have lupus? help please!!!

Mecswim, have you read all the "sticky posts"? They're under the yellow "Post a Question" button. BTW, wild swelling reactions to insect bites is one of the "alternative criteria", so make sure you read those. (Me, too. Bee stings used to make my limbs double or triple.) Also, the one on antiphospholipid syndrome (APS). (Oh, heck, read 'em all!)

Here's how I understand certain aspects of the sticky posts.

The 11 diagnostic criteria don't have to be met simultaneously, you can meet them over time. Envision checking each off in indelible ink, once met. The criteria don't include all possible symptoms or tests that might be positive. Instead, they're the things that have been proven to be the most useful in distinguishing lupus from other conditions.

A dr. saying that your labs looked more or less OK doesn't prove anything if the "right" labs weren't run. You should start getting copies. And even if all appropriate AI tests were done, subtances being tested for (autoantibodies, serum complement components, etc.) can wax and wane as conditions flare and recede, so the timing of the bloodwork can count. And not all labs are good at performing these tests; my rheumatologist uses only labs who specialize in doing the AI tests.

Only a few autoantibodies are listed in the criteria, but many more can occur. The few autoantibodies that ARE included are the ones considered the most specific to lupus. (I ended up with ones NOT included in the criteria: anti-Ro and anti-La---silly me---that totally confounded my suburban drs.)

Your finger nodules could be very useful. I thought of calcinosis, but I bet there are many other possibilities.

You could borrow library books. The best lupus books cover lupus, but also differential diagnoses like scleroderma, MCTD, UCTD, RA, Sjogren's, vasculitis, etc. An amazing thing I read in one such book was the account of a group patients in a rheumatologist's practice who initially presented as ANA-negative but were dx'ed with lupus anyway. After he followed them for years, they eventually resolved into 4 groups: antiphospholipid, kidney lupus as confirmed by kidney biopsy, patients who'd taken steroids so long that their ANA had disappeared, and ANA-negative lupus aka Ro-lupus (very rare).

My point here is that there are people diagnosed with lupus who don't meet the ANA criteria "tidily", and some who don't even meet 4 yet still have the dx. I imagine the same holds true in other AI's and other conditions, that there are outlier patients who don't tidily fit into the most classic patterns.

I can't know whether this is lupus, close cousin, or something else completely. But I do think seeing a rheumatologist makes sense, plus other consults as needed---like nephrology, possibly cardiology too. Personally I'd put kidneys at the top of my list of concerns, and anyone who doesn't address your past glomerulonephritis directly & quickly, I'd flee.

I hope you post anytime the mood strikes & also let us know what happens next. We're only patients but have a lot of personal experience to share. Bye for now. Best wishes, Vee

 
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