janicebuf

2/2
Some literature is coming back saying the earlier the treatment is started the (far) more positive the prognosis, with some patients even seeing functional reversal in certain limbs. I know testing is a super stressful thing to confront, but just curious.

Also, my many women in my life get botox and they always get facial twitches after

All the best,
Paul

1/2 Hi Janice,
Just saw your post and so sorry about your family history. I cannot even imagine.
Looks like your family members were identified having the SOD1 gene? Couldn't see anything in your history if you've been tested yourself? With all of the very promising treatments targeting SOD1 & C9ORF72 in trial, just wondering if you thought about getting tested so you could 'jump-the-gun' if the worst were to happen?