I sent you a PM awhile back, I'm wondering if you got it? I moved this post from the "sticky" area to Lauri's Lounge. Almost nobody would see it in the sticky area. This way, you can get more responses.
I understand the frustration, and the anger with so called health care professionals. Leaf, I had some terrible things happen to me when I was a kid too. And now I'm dealing with not only Lupus, but MS as well. I don't know why these things have to happen to people like you and I.
I get the "Oh Rob you look so healthy" comments all the time. I try to take them in stride, and realize most people don't mean anything by it, they are just trying to be nice, and I don't think they know what else to say really. I gave up trying to convince others to take my problems seriously. If they don't, they are out of my life, and that includes Dr's and all the other specialists. Accept me, help me, otherwise I'll move on is my attitude now. I wish I knew something better to say to you. Just know that you are not alone.