Hi Colin,
Sorry you're having this setback. I have a friend who was told (finally!) that he has one of the more and more common and as-yet-unclassified autoimmune diseases that they are seeing more frequently. He's had twenty years of tests, scopes, surgeries, and physical therapy. He's been told he has lupus, cancer, fibromyalgia, etc., only to be told a little later that he does NOT have those. He's also had to deal with everyone around him thinking he's just high-strung. Ha! We used to joke because people would, innocently and well-meaning though they might be, always ask him things like "have you tried...aspirin?" It's an old inside joke between us. "Oh, you're unable to walk because of the searing pain in your legs...have you tried aspirin?" LOL
At this point in his life, though he has some bitterness (constant pain will do that to a person!) and a different view of life than most people, he has carved out a life for himself and is happily married. He lives with the knowledge that, because nobody knows what is wrong with his body, there probably isn't a treatment. He's kinda got a Buddhist philosophy (well, when your life IS suffering, you don't have a lot of other options!).
Anyway, my point is that I hope you are able to find some peace of mind. It's not easy. Also, don't give up on a diagnosis. Even HLA negative folks get AS. There are subtypes of genes that are implicated. It might NOT be HLA after all, but something more subtle that they have not yet found.
OK, I am officially rambling. Just had coffee.
Take care of yourself!
~Moll
