I was diagnosed accidentally. I was losing the circulation in my fingers. My doctor told me there was nothing wrong with me and I just needed to quit smoking. I saw another doctor who referred me to a vascular specialist (since I was only 39 at the time and my father died of arteriosclerosis). He did the bloodwork and sent me to a rheumatologist. If I had taken the first doctor's word for it...well, I'd probably still be smoking, but not have a clue about what was going on with me. I have been diagnosed with lupus (although the "ringer" test, the DNA, was negative, so depending on the doctor, they'll call it lupus or mixed autoimmune disease), sjrogrens (and I think I'll always spell it wrong) and raynauds (probably spelled wrong as well). I am on plaquenil which has helped immensely. Sometimes I have all sorts of symptoms, the rash, swollen joints, night sweats, aches, (I almost always have nightly low grade fevers), etc, but the blood work isn't any different than it is when I don't have these things. Some days I feel like someone put a very large syringe in me and sucked all of my energy out. Days like that its an effort to walk around the house. My rheumatologist doesn't get excited about anything. I'll tell her something new hurts or some other symptom, and she'll say, "Hmm" and write it down. LOL. But, I figure, those things usually go away (my tailbone ached so bad for a year that it was hard to initially stand up from a sitting position...it went away eventually) and I trust that she'll be there for any big problems. Even when I have something seemingly serious (a dangerously low sodium level last summer), they never seem to find the answer to it despite a year's full of tests that only lead to more tests. I guess I'm rambling now. But, I want you to know that I think we all experience what you're experiencing right now....no answers, no explanation, and sometimes little to no validation. I hope you find a doctor that will validate your concerns. In the meantime, there's alway us.
