Hmmm, that must be somewhat upsetting . . . to find no one with your disorder. I just did a very quick search and I didn't come up with a definitive hit. I did find this post - might be worthwhile to contact both parties:

post

What have you tried in terms of searching? Search engines can be very hard to configure correctly to return the info you need. Have you looked on specific neurological forums, other than this one?

rafi