Hello Tulip - Welcome to the KA family. Join Tink in saying that hope you'll tell us your story. AS is such a weird disease that all info is grist to the mill.
Look forward to hearing more from you - and don't forget, any questions, just ask away. There is sure to be someone who has some sort of info to clarify matters for you, and if not, then can at least be supportive, and, send you a big (((HUG))).
Have a happy day -
Molly C (France)
Keeping on Keeping on (as one does!)