So far, your basically where we're at.

Genetics says we have a genetic (heritable) disorder that seems to have autoimmune involvement

Neurologist says we have a genetic disorder with definite autoimmunity attacking the nerves and will treat with the basic (gabapentin type nerve drugs), and defer to rheumatologist to treat the autoimmunity.

Rheumatoligst says we have genetic disorder with possible autoimmune involvement, but since it doesn't show inflammation with ESR and CRP, she is afraid to treat me with the fear of making me worse due to the underlying genetic thing. I'm going for a follow up with her and I think she is pretty smart, so I'll post after the visit with an update.

It took 4 years to get this far and this was all pretty much obvious from the start. Hopefully I'll be cured by the magic of the universe before they figure it out at this rate.