Liz... first of all ((( Huge Hugs ))).
I can definitely relate to how you feel about docs viewing you as "interesting and confusing."
I don't know if you know, yet I learned this the past year or so. There are classifications docs retain in patients' files that denote our "ranging." By that, they mean, a scale by which patients are placed within.
I'm on the "moderately complex" or "complicated" level. The one "above" ranks as "severe." (That's the life and death patients.).
I totally "get" how you feel.
Yet, too... I also don't like that if your facial (non)feeling/symptoms remain without dx, that you aren't possibly getting all that might be available that could possibly help you.
I do like where someone mentioned the idea of your docs doing a conference approach or "round table."
These days, with so many specializations within med., it's also so important that each references the others in testing results, etc.
Mine, to cut through it all, cross-reference one another - on films, lab tests, insurance things that arise and so on.
If you have a doc whom presents as more assertive or open than the others, I'd ask if that doc could be the "team coordinator" and work with the other docs. Someone has to take the lead