Hello,
I can't answer all of your questions, but I can comment on a couple of them.
Indocin etc are very common first-try treatments for AS, and don't freak out if NSAIDS don't do miracles for you, because we're all different and some of us just don't respond well to them (myself included).
I have lots of issues with my hands and ankles too - AS can occur anywhere there's a joint or an enthesis (where tendons attach to bone) it's not just a spinal thing. Also, I've noticed that certain treatments help one part of my body a lot more than another - (for example, my latest treatment is helping my spine and legs hugely, but my hands aren't responding very well to it).
I'd definitely recommend taking a notebook with you to your next appointment, with a list of questions you and your family have come up with, and also take notes at the appointment. If you have someone who you feel comfortable with who could go with you, that might help too (I know I always forget something I wanted to ask the doc unless I take my list, and a second person always thinks of a little different set of questions for the doctor).
best of luck getting an accurate diagnosis!!
,
-Bridget
