Recent content by SusieN

I'm very sorry to hear this. I also am awaiting symptoms having been genetically tested. My family carries the C9orf72 gene mutations. Lost my grandmother is 1993, my mother is 2008, and my sister in 2018. I am also praying for my two daughters, and am very thankful for this forum for...

Actually I have read before that a child can carry the gene but not have enough mutations of it to manifest, but pass it on to a child who might then get enough. It can also depend on the other parent, if they might have mutated genes to pass on. Five years is a long time. If your symptoms HAD...

Sandy, my sister used sativa tincture through her feeding tube to help with the saliva, and it did. She used indica tincture to help her sleep, which it did. I would love to get a link to the studies about NADS+ that you mentioned. I have the c9orf72 gene mutations that say I'm going to come...

I agree with Nikki. ALS symptoms don’t come and go. They may seem a bit worse when you get tired in the evening, but once a symptom is noticed, it’s there. Sometimes overnight. No going back. Do your best not to self diagnose. It is very rare at your age for familial onset. I lost my mom at...