But why does this have to be when we are so obviously ill? I don't quite understand that, unless it is just the point that no one knows where to look other than lupus and RA. I have had 3 low positive (1:80 speckled) ANA, and while looking up that data for this thread, I noticed for the first time the very high anti C citrulli (184). Even if doctors don't know what that means if lupus and RA are negative, wouldn't you think that it should be investigated further when we are obviously in a downward spiral?
Sorry, I feel like a brat with this post, but this IS my life that is slowly wasting away. I do understand that you know how frustrated we can get, so my apologies, I'm not trying to be insensitive to you. Just venting!
My daughter used to say she wanted her Mom back, but now that she is 21, she no longer remembers what that mildly ill and fatigued Mom was even like. All she remembers is the Mom that can't hike, camp, be social, go to movies, clean, cook.....