Hi, I am currently waiting for test results to see if I have an autoimmune disease, either rheumatoid arthritis, lupus, etc.
I have had off and on joint pain for about 15 years now, my blood tests are always normal. Recently I had a terrible flare-up of pain, bilateral joint pain in my shoulders, elbows, wrists and knees. I also have had anemia (cured by iron supplements), my hair is always falling out but it's so thick you can't tell, reynaud's in my feet, restless leg, fatigue, depression, strange red bumps on the palms of my hands, red on my face, and little red bumps on face (diagnosed as rosacea).
I have another couple days till my tests come back, but I am skeptical it will show anything as it never has before. What do you all think? Something is wrong, just wish I could find out what!
Thanks for listening.
IllinoisMom, hi & welcome. I'm sorry you've had so much going on, with so few answers. I was in that rut, also, for a long time. It's numbing.
Is the dr. running these repeated tests a rheumatologist?
Have you seen the results of previous tests? If not, you should ask for copies for your file. I'm thinking (but I'm only a patient!) that you should see, in addition to standard bloodwork & the basic ANA test, a good number of *very specific* tests, such as anti-ds-DNA, anti-Sm, anti-Ro, anti-La, rheumatoid factor, anti-RNP, etc.
Along those same lines: there are at least 16 (!) autoantibodies & complement problems seen in lupus. i.e., it's not just the two (anti-ds-DNA & anti-Sm) that are actual "criteria". To see a list, look for Dr. Daniel Wallace's excellent lupus hardcover in your library; he lists many. (Also, Dr. Robert Lahita is another fine author.)
Speaking of "criteria": have you seen the "sticky posts" (permanent info posts) at the top of the thread list? One contains the diagnostic criteria for systemic lupus; you generally (not always) have to meet 4. And, FYI, there are also some "subsets" for which you may meet fewer than 4 criteria (discoid, subacute cutaneous, drug-induced, etc.) Once you meet a given criterion, it's permanent: think of checking it off in indelible ink.
Has your dr. discussed possibilities, test results etc. with you? Does he share his thinking on how many diagnostic criteria you've met? In short, do you feel you'll ever get answers from this dr.?
I hope you post more when you can. Bye, with best wishes, Vee