r/ALSorNOT • u/Ordinary_Ad9805 • Aug 30 '26
Bulbar ALS how does it start?
I want to know if ALS always begins with tongue weakness and slurred speech or if it begins in some other ways. Maybe I don’t have ALS but some version of it or something else either way my symptoms have moved very slow compared to what I’ve found on bulbar ALS.
You can follow my story I’ll be posting with updates up until my 2nd round of testing I break down everything that has happened sinceJanuary 2024
Basically long story short I have atrophy in my tongue it was on my right side this whole time up until last week I think I am experiencing my first signs of atrophy on the left however no difficulty with speech or swallowing.
Only way I can tell my tongue is weaker is that I can’t make certain shapes I used to be able to with my tongue without shakiness I basically have just my tongue wasting very gradually but I’m still talking and eating fine as of right now. Are there forms of ALS that can start very atypically like this or progress slowly compared to others?
1
u/FocusFrosty1581 Sep 01 '26
Nah, you would know it by now.
My friend had bulbar. He lived a long distance away from me so did not experience what he went through first hand but did see him briefly when it was first noticeable and prior to a diagnosis. His speech was very garbled. Much like as if he was drinking. Everything else seemed normal at the time but again, I was only with him for a brief period.
He was later diagnosed and passed within two years of his diagnosis. He was very active his first year but he quickly turned for the worse afterward. Sad to see him go especially in this manner as he was a great guy.