Yes, it is a long time to go with a misdiagnosis, but it happens. I am distressed, but only because it has been so long and for a couple of other reasons. I am a bit miffed at the medical system and the researcher/specialists I have seen over the years. Makes me wonder where their minds are when they examine me. Are they seeing it, but not wanting to challenge a fellow research collegue's initial assessment? Why did it take a specialist who is not a researcher to "challenge" the diagnosis. As he put it Monday, "If you presented to me today and I didn't have your past medical history, I would not see the [disease] in you."

Yesterday I spent the day trying not to cry and trying not to hyperventilate; I had grandchildren yesterday. I talked by phone last night with a fellow-disease friend and my psychologist .

One believes my diagnosis of my misdiagnosis, but the other is skeptical. I have talked about this before to my doc because I had developed my doubts, and have two fellow friends who would know, but he just doesn't get it.

So, Friday will be an interesting and frustrating conversation without a doubt. After last nights conversation I am not looking forward to Friday. It may be the first time I get angry with him...maybe even curse a bit...LOL.

Thanks for the support. I am off to another grandkid day.