Hi Cal,
I agree with your neurologist re: completing a linear investigation prior to DNA testing. In my case, we are using DNA testing to differentiate between two subtypes of a neuromuscular disorder.
There are so many possibilities within neuromuscular diagnoses, the results of my DNA testing will not be relevant to your condition.
I can empathize with the distal weaknesses.
I can also empathize with going through the diagnostic process and not having answers for a long time.
It can be so frustrating not having a diagnosis and wondering. During these times, I try to be present as much as possible for each day, for today. I try to have the best day possible each day.
I hope your doctor will continue work-ups, as sometimes more shows up in testing, with time. Do you see a rheumatologist for Raynaud's?
I've had good luck with my neurologist and rheumatologist both testing and communicating with one another.
Take care!

DejaVu