Maybe even make breakthroughs in the treatment of this? I have a personal specialist for this condition, it was finally diagnosed in 2017, by a neurologist subsequently now my specialist! I have noticed a few effects, not really listed in accepted lines of Schwannomatosis NF3 symptoms! I also have Juvenile Myoclonic epilepsy, which 'started' the same time as symptoms of NF3, could they be indirectly related? They both started in 1970, when I was aged 14, I am now aged 66, male, and retired!