I like your comment about connecting the dots. It's so true. I am in that process right now. My sister, who is two years older, has the same issues that I do, although mine seem more debilitating. For that reason, I assume my length dependent SFN is hereditary, as my Dad and Granddad have many of the same issues - again, not as severe as mine. I see each specialist for each problem (gastro, pain doctor), and I now have the SFN diagnosis to share with them. I accept that there is no doctor here who can handle all of my issues. However, my neurologist did order a consult with UAB. I was given an appointment last May, for this December! Seven months of waiting! UAB suggested that I call frequently for cancellations. That trick finally worked, and I am going this week. So a four month wait, instead of seven. Seems ridiculous. But anyway, instead of self-referral, have one of your doctors do the referral. That seems to work better.
There is a SFN clinic at UAB, so hopefully this neurologist can answer my questions, and help "connect the dots" a little better. Then I can share his information with my doctors here.
There is also a Dysautonomia Clinic in Birmingham, which is able to all the testing for Dysautonomia (tilt table, sweat test). With a doctor's referral (sent twice) and a phone message from me, there has been no response. I'm really not as interested in that diagnosis, because I don't see how it will change my treatment, so I haven't pursued it any more.
I'm using Birmingham because it's a less then 2 hour drive from me.