Hi everyone. I'm glad to see I don't need a pigeonhole Dx to fit in here.

All I have is a bunch of confusing symptoms and a lot of normal blood tests -- so much normalcy I am beginning to think I'm nuts!

I really need some new ideas.

The only demonstrable signs of illness have been: swollen thyroid (no longer swollen, euthyroid), Raynaud's, persistent positive anti-thyroid peroxidase, a single mildly positive anti-cardiolipin, and positive IgM for EBV (since at least fall 2002). Amennhorea, unkown cause, resumed on its own after two years. Also mild sensory-neural hearing loss, nystagmus and coloric deficit on ENG. The face rash, I am told, is not Lupus -- it doesn't avoid the nasal folds and doesn't react to sun. The color changes and pins-and-needles in my hands and feet are triggered sometimes by cold, but more often by exercise and fatigue -- if I walk too far, my hands go blue and white! And while we know from direct observation that my hoarseness is caused by the non-functioning of my anterior vocalis muscle, no one can explain why it works when I am not flaring but becomes non-functional when I am more symptomatic.

At one point we wondered about myasthenia, since my eyes and face droop when I get tired, and my eye muscles and voice also get fatigued and stop working properly. When the doctor here observed that my neck muscles were weak, he sent me for an EMG and antibody test, but both were normal.

The rheumatologist here is prepared to let me stay on the plaquinil, and I also take an SSRI, anti-inflammatory, and Provigil. I sleep OK, and my sore points don’t bother me if I don’t touch them. Pain isn’t really a major facet of this, as long as I sleep enough.

All in all, I am very confused. I feel uncomfortable with the lack of a diagnosis -- it doesn't change the treatment, but emotionally it is hard to be sick for so long and not be able to say "this is what it is." Meanwhile I am working to increase my exercise gradually, I’m trying to lose the weight I gained from the prednisone, and it is coming down slowly. Other than that, I don’t know anything else I can or should do. If you have any ideas, I would be very appreciative. I don’t think my doctors here have any left.

Sorry this went on so long. I guess I needed to complain a little -- and this was the edited version!

Hope everyone has a good day -- if you can't have one, try to give someone else one! Hey, these smileys are fun!