Hello everyone. I do not have DX of Lupus but I am starting to think that it is the cause of many problems I have had the past five years. It started five years ago with thrombocytopenia, they said it was ITP and removed my spleen. At the time I had a positive ANA test but no other criteria for Lupus so no DX. For the past two years I have had a lot of unexplain symptoms such as severe pain in my knees that comes and goes. Last summer I broke out in a horrible rash evertime i was in the sun. For the past two years I have been told i have protein in my urine and the most recent problems have been blood in my urine with intermittent flank pain. I have been having tests to detect what is going on with my kidneys and i have to see a urologist today. But the more I read about Lupus the more I think that it could be causing all of this. I also have intermittent chest pain and sometimes feel like my heart is beating so hard that its going to explode. I also have a five year history of migraines with visual disturbances and at times my hands have gone numb and I have become disoriented(they said that this was caused by the migraines) Is it coincidence I have all of this? I am only 23 years old and have had many medical problems already. I also had appendicitis that ruptured last year. I feel like a hypocondriac trying to DX myself but with the recent unexplained blood in my urine (for the last 3 weeks) and all the kidney tests that are not finding a cause, I have been scared and very anxious trying to find out what is going on. My doctor has not suggested this, should I ask him if it could be Lupus? I almost dont want to know but I also cant wait until my kidney function declines more with no explanation of the cause.

Dear Emalis, There are "sticky posts" at the front of the board listing (1) ACR 4 of 11* diagnostic criteria for lupus; (2) "alternative criteria" for lupus, and (3) APS info (a clotting disorder common in lupus). [*These criteria should be counted over your lifetime, meaning they don't have to exist all at once. Envision checking them off in indelible ink.]

I'm no doctor, just a patient. But, gee, what you list sounds autoimmune. Plus photosensitive rashes are very common in lupus... Even things like appendicitis tend to occur more often in folks with inflammatory diseases, I've read.

I honestly think you should bring up lupus. Ask if it's been considered, tested for, get copies of the earlier findings, etc. If you still have a rash, even THAT can be biopsied by a dermatologist & narrowed down to lupus (though not the exact lupus subset). Better yet, a consult with a rheumatologist would seem like your best move.

Why drs. keep things so hush-hush is beyond me. Years into my doctoring, a radiologist doing a kidney function test let slip the word "lupus". But you sound a LOT savvier than I was. I think you should use that---push (politely but firmly) for better explanations, theories, game plans, other consults, etc.

Just out of curiosity, where was your rash & what did it look like? Did it scar or depigment? Was it on your face? Anyway, I hope you stay in touch with us here. Best wishes, Vee (Dx'ed with the SCLE subset of lupus in 2000, positive anti-Ro but negative ANA)