New Member, Old Lupie!
Just found this site. I'm Oriole, I live in Birmingham, Michigan, and I was dx'd with SLE in 1989. I was in my mid-20s at the time, and I'll always remember that day...I woke up the morning of March 17 (St. Patrick's Day) and every joint in my body - including my big toes and my jaw - literally felt like they were on fire. I'd never experienced anything like that before. I went to work, and as the day progressed, I only felt worse. A co-worker mentioned I was walking like Quasimoto; I was hunched over because I was so stiff and sore. At lunch time, I went to my credit union to cash my paycheck. It was in the same strip mall as an Irish Pub, so I had to park two blocks away, thanks to all the St. Patty's Day partiers. It took forever to slowly shuffle my way there.
On my way home, I stopped at a local Urgent Care Clinic (I had no regular doctor at the time), explained my symptoms, and they ran some blood tests. When I called two days later for the results, the doctor got on the phone and asked me if I knew of a rheumatologist. "What's that?" I asked. He explained that some of my tests indicated I might have rheumatoid arthritis, and that I should see a specialist. I was lucky in that I found a rheumy very near where I worked, and he turned out to be one of the best in the state (according to the Lupus Foundation). He asked a zillion questions, many of which seemed to me to be irrelevant, but it turns out he knew what he was doing. He then told me he suspected Lupus, and ran approximately 1,469 different tests.
I've been up and down since then...developed Raynaud's Syndrome and Anti-Phospholipid Antibody Syndrome, and had two small strokes in the meantime. But in the past two years, I've been doing a lot better (knock wood), although I still get weird, new symptoms that I never know whether to attribute to Lupus, or do I have some new dread disease? (I'm a bit of a hypochondriac at times....)
gosh you have been suffering havent you...
its nice to meet you..hope we can chat sometimes x
Don't you love some of the weird questions? And you wonder - should I tell the doc that I had this fleeting symptom - or am I being a hypochondriac?
Welcome to the board, Oriole, and we're glad you're here! I was diagnosed in 2002, so have not nearly the experience you have. I've gone through 2 rheumies, settled on a third. She's OK, at least she listens and is attentive. THAT counts for a lot!
Have a good day!