I am a 24 yr old from michigan. I was diagnosed at age 16 after showing digns at age 13. I also did not inherit it from my family. It took a few years because my primary doctor thought it was "all in my head". Finally my doctor sent me to a neurologist who kind of specialized in PKD. My symptoms would show up if I stood suddenly or was stressed. I started taking trileptal and it worked well but after I wanted to get pregnant I stopped. Well, 2 years later, I am not keeping it under control without the meds but want to take something that has little to no birth defects