Thanks for all the suggestions. In fact I do see an NF2 specialist at Mass General Hospital. I can't say for sure if he did the full body check you referred to. I can only assume he did when I first went to him. However I did have a full body MRI which he checked and reported no tumors (done last April). I think it was with contrast, will check on that tomorrow. He's had no response to the heavy tired leg problem, indicates to me that he never heard of it. I wanted to see him about all the symptoms I'm having ( dizziness, heavy legs, buttocks and base of the spine, extreme fatigue, poor balance and more. I was told he wouldn't see me before my next annual exam (December). I've been given some exercises to do, but would like to know what your exercise story is. Do you exercise 2-3 hours every day? Who gave you the exercise regimen? Are you still doing it? For how long each day?
I feel up a creek, as though no one is in charge of this horrible condition, the NF2 guy can't be bothered. Don't know where to turn. Hence I'm turning to you. Am enormously appreciative of your sharing with me.