Instead of leaving your thread unanswered( which attending to unanswered threads is a Community Liason role), I'll post the link to a type of check in styled thread that was previously posted. In doing so, hopefully it bumps it to attention, so that experiences with this disorder can be shared.
Personally wondering why if listed in the dsm, there isn't more chatter or what the statistics say about diagnosis?

http://forums.psychcentral.com/showthread.php?t=397757