Sue, you're right on finding help, that is all I wanted as well. Instead of doctors telling me what it might be and dropping me like a rock. I had a really hard winter, and struggled alot, and cried alot, I reached out to a chronic pain service in our closest town and they took my hand. THey didn't care what I had, they weren't prepared to leave me in agony and despair. I went to group classes, self management classes, and I learned alot and met 20 other people living with chronic pain. THe class was run by a Physio, Occupational therapist, Psychologist and a doctor (who is now my doctor) To say my new doctor was appauled at the treatment, or lack of treatment I recieved, would be an understatement. He and his staff have been amazing, calling and emailing to make sure i'm getting the calls from the diagnostic departments and that i'm making out okay with my meds. And I see him every 4 weeks... where normally they are booking him 12 weeks ahead. I feel very supported, and you're right, I don't really need a name for the disease as long as I am getting help.
I can completely understand my fathers anger, but it is what makes me anxious about asking him for anymore info or even suggesting that what he has might be AS... he's been through so much, I hate to open old wounds, if you know what I mean.