TL

I don't know why this didn't pop into my head a while ago...have you looked at Rippling Muscle Disease? Autosomal Dominant, seems to fit a lot of your symptomotology certainly better than the MPFS. Take a look See my PM on the ESP reference....you are not the first to mention that, LOL....

Here is just one reference, however, google it and a lot will come up. I did find, one immune mediated

I always feel better when I find an immune mediated reference, as I wonder if a course of IVIG would work....??? Long shot, but, worth a try.

see

http://www.ncbi.nlm.gov/pubmed/11353417

Megan

You need additional testing, which in Australia seems a bit difficult to get. Try to find a neurologist you can trust, stick with him/her and work together. As soon as skin biopsy for nerve fiber density is available in Oz, try to get that. My other suggestion is to ask for a betablocker....it just may knock down the fasciculations....which forgive me, I have to abbreivate as fascics...