Hi, I'm still working with the doctors in NYC at HSS and I'll find out more in mid April what they suggest. It is hard to travel to see a doctor. If there is no doctor in NYC that can help I sort of feel like maybe this condition is just too odd to let anyone mess with. It is hard enough because friends and family don't really understand because you can't see the problem and they don't know anyone else with the problem and have never heard of it. This thing can really be a bummer as I'm sure you all know. I have an EMG in a few weeks. I don't even know if these nerves could get better. I sort of think there isn't permanent damage because the pain and problems all change with position and it is usually subtle movements or holding small things, glass water, pieces of paper, a towel etc. I had an EMG about 4 years ago and it showed all different nerve problems.
Good luck to everyone out there dealing with this!