Joanna, your disorder sounds so much what like some of my family members are going through. I descend from some of the very first settlers in new France and a lot of illness has come down my family tree lines. I have been studying my family history extensively. In my family very lax joints. I also have sudden onset sleepiness but I believe for me it is a metabolic issue with my electrolytes that triggers periods of paralysis and at other times sudden onset sleepiness. Right now my diagnosis is Andersen Tawil Syndrome with probable Joint hypermobility syndrome. Do any off your lines descend from royalty? In my family there are a lot of royal look alikes who are very ill. I have a facebook page for Andersen Tawil syndrome with information as well as a private group. JUst search Andersen Tawil syndrome and it should come up. By the way, I know a Quakenbush family here in Indiana. Same town I live in.