You are absolutely right. The one thing we definitely know is that we're still a long ways off from even having the books written on it all, let alone any one human having even majority of the information in their brain. I'm in pathology, sort of the end of the diagnostic road. We have the molecular tests and microscopes. And we still don't know. In fact, we're best positioned to see the vast ocean of unknown before us. We can't even see the other side.
Sorry to hear about the diagnosis, you've done extraordinary things despite it and I hope more patients can emulate your success. I am constantly educated by my patients.
You're not Canadian, are you? The GP vs endocrinologist issue is actually well-studied there. Unsurprisingly, the specialist-treated patients fair better.
It's also not possible for a physician to be informed about every possible condition. I have type 1 diabetes, and I know a lot more about it than my GP does -- odds are she's only going to see a handful of T1Ds in her career. When I'm talking to her about my diabetes, I'm educating her rather than vice versa. (So she sends me to an endocrinologist, and he's as far ahead of me as my GP is behind me in knowledge of diabetes.)