This may sound weird, but I will share what my doctor friends told me.

A friend of mine is in a long line of doctors in his family; they are nice, but do admit when patients research online they worry that they may 'force' symptoms on themselves. It leaves those who really have them being pre-judged. I've told him some of my theories about myself and my condition. This is what he said:

Investigate rare conditions and write down every symptom you have that are associated with them (like a checklist) and then find the nearest school of medicine or look for what he calls a 'newbie' doctor. He said find someone who has this fresh in their brains or people who have the drive to diagnose something rare. He said to bring your checklist, medical records and a body-chart.

I have the body chart posted in the information sticky. This lets them know each sensation you have. Print, color and date your 'body charts'

Hope this helps!!