Hi
I only just found this site so I know I am a few yrs late (to your first post anyway)
I have just been diagnosed with this condition also. I have had symptoms for 9 years now. started in my middle toe on left foot then spread to toes next to it. then same on right foot. I dont have the pain that most people have had with this condition. I get tingling/creeping feelings on the spots before they go numb. 9 years later and I have not regained any feeling in my toes. Once goes numb thats it for me. I now have spots totally half my face, my skull, left pinkly finger (typing is very wierd cos use that one a lot when typing haha) couple of spots on my thighs/legs. and I cant feel my breasts.

I had 9 years of going to Dr after Dr. Had every single one of them look at me strange and go hmmm never heard of that before, or thats soo strange.
Start to think its in your head. I have had more blood tests than I can count, every one of them came back normal. Nerve conduction test, which was normal and MRI on brain and back.
After a 3 yr wait finally got to see Neurologist and funnily enough he had just been to a conference where another Dr had presented this condition. my Dr said 3/4 of dr's there had never heard of it before or had patients with these symptoms. If my Neurologist had not attended I may still be waiting for a diagnosis.

I did some research and found that most people who have symptoms had them go away after 4-6 yrs. and symptom onset is usually in 30's. I was in my mid 20s and symptoms for 9 yrs.

Sorry I cant give you a light at the end of the tunnel but I can let you know that you are not alone.

I go back to neurologist in september and from appointment letter its 2 hours long and may require testing in other departments (I told my Dr if he could find any studies or other Dr's looking to do studies I would sooo be a guinea pig) If i get any other updates/news on condition I will update