Little backstory I got sick at the age of two misdiagnosed four or five times anything viral could put me in the hospital and in a full blown “episode” as my mom would call it. Ck’s constantly going up and down, finally at seventeen I was diagnosed with LPIN1 I was the first in Texas and currently one of the oldest living with it! Fast forward to today my husband and I had an appointment two weeks ago to get him tested for my gene mutation and I’m so beyond nervous they didn’t give us a time line on when the results will be in unfortunately but they suggested I need to start meeting with high risk doctors now before we even know if having children of our own is a possibility. Am I the only one that thinks we should wait until the bloodwork is back and go from there or should I start “building the relationship” now with the doctors like genetic doctor suggested?