DancingJester, welcome to our growing community!
You speak my words exactly. I have been very annoyed by every doctor I have visited on this. None ever cared or at the worst ridiculed me. As you said, I would already have been happy when I had been given a definite diagnosis. Only when you have a recognized condition, you can know what to expect in the future. For the most part we are all the in the dark.
To start with, JohnnyUtah shared one rather encouraging cracking story on life long cracking.