New to board, problems with doctors
I just found this board. I'm having a terrible time with my doctors and was wondering if anyone else had been through this. Any words of wisdom?? I started with symptoms in high school...chronic infections. I'd have tendonitis in my hands, shoulder, feet etc on and off. I got married at 18 and got pregnant right away but lost the baby 3 months later, got pregnant again 3 months later and lost the baby at 5 weeks. Then a year later I got pregnant and my joint pain, fatigue etc went away. I felt great except I had complications through out my pregnancy. My son was born 5 weeks early with an omphalacele (organs on the outside of his body) cp and other complications. About 6 months or so after he was born my symptoms came back. As the years went on my symptoms got worse and closer together. Then in 97 I was diagnosed with Lupus. I went on prednisone, methatrexate, plaquenile and a ton of other pills. I leveled out in my symptoms and my flare up were less severe. In 2002 we moved to Seattle (Navy family) and my doctor at UW suddenly said I did not have Lupus, my ANA was now negative. The Lupus test they did was negative. He took me off all meds and I just crashed. I am constantly in a flare now. I'm up and down, up and down. My symptoms are muscle pain, joint paint, in the morning I am stiff and have trouble bending, red face with bumpy rash (diagnosed now as roascea instead of Lupus rash), mouth sores, TERRIBLE fatigue, I feel almost like I have the flu, I run a low grade fever on and off, I have torn my achilles tendon just taking a step, same with my shoulder, I have numbness in my hands and feet, I get shooting zings of pain in my arms and legs, I've had hair loss before, I will get what almost look like boils. I have trouble with my stomach. I will go through periods where I can't keep food down, constant diarrhea. I had surgery to remove a ovarian cyst and when they opened me up they found I was full of adhesions. My bladder is constantly irritated and will bleed but I dont have a bladder infection. If I get sick it takes me twice as long to get well and hits me twice as hard. Now we have moved over to Port Orchard and suddenly my ANA is now positive again. I'm now trying to get in with a rheumatologist. Has anyone else been diagnosed and then told they didn't have Lupus? Right now I have a couple doctors fighting over what my diagnosis should be.
Port Orchard, WA