Jen
I've never heard of this but I will offer this (hey, it's free right?): Don't give up. Just because the doctors that you've consulted can't find it doesn't mean that there isn't one out there with a clue. Doctors know SO very little... trust me. You're on the right track using the internet. My first thoughts were that there is a neurological problem going on. It may be a very complex one and doctors nowadays just don't want to deal with complicated stuff. You may have to go outside of your insurance plan (especially if you have an HMO) and pay through the nose to get someone to take the time to find out what's wrong. It may be the only way! Good luck, Jen