I have had many frustrating moments with professionals that have no clue about my condition and treat me like an idiot. I imagine you were not as impolite as I have been though.
I sympathise with you. It makes enduring illness all the more difficult and frustrating, not to mention DANGEROUS in your case. Patients should be at the centre of their care, you know your case better than anyone, but they seldom are - anywhere in the world. The medical model doesn't work that way.