Hi,

I've only just been diagnosed with this condition. There appears to very little information on it and certainly nothing up to date from what I can see. I'd be interested to know if there is anyone else out there suffering from this. I'm particularly interested in the progression of the illness as, although it described as benign, there is no sign of improvement in my case and my neurologist has told me that it is unlikely to get better.

Looking for a little light at the end of this somewhat painful tunnel