Going to a neuro-m spec. is probably the better way to go...why? because he/she's seen more of what you have than likely anyone in your area. Unless you are in NYC. And then...IF you are in NYC? then your docs are truly counting on help from this particular quarter.
Golly, what have you got to lose at this point? Besides more time and tests!
Some of what we've got is treatable thru meds, others thru other more specialized therapies. Just give it a shot, please? - j