I wouldn't know how the NIH operates but I'm not a big fan of specialist at this point in my life. If you read some of my previous threads you'll know why. I would think the patient should have a right to their records but it doesn't seem that way, in some cases.
I don't know if 'our' SPG 11 plays a role in our illness or not but If I had to guess, I'm assuming it would, to some degree, who knows?
I've read about the juvenile ALS. My symptoms started when I was about 42.
Seems we both have progressed slowly but with different symptoms. Sorry To hear they thinks it's FTD. Do they mention ALS with it? Has anyone mentioned ALS to you?
My main symptoms are hyperreflexia (all over), clonus, on/off jaw jerk, hoffman (gone now), fasciculations & weakness. (Not clinical per Als specialist) I've been experiencing a lot of shoulder/joint pain now as the weakness gets worse.
Can you build muscle?