suzannj
Distinguished member
- Joined
- Jul 5, 2008
- Messages
- 121
- Reason
- Learn about ALS
- Country
- US
- State
- NY
- City
- Buffalo
Hi Everybody,
My former thread was "Terrified Mommy of 1 Yr. Old".....still applies but I have new questions so thought I would start a new string.
After reading (and reading, and reading!) I'm getting confused. (As an aside to other folks who have answered my questions, thank you SO MUCH. I am now scheduled to see a neuro but cannot get in for another month which feel like forever) What I know at the very least is ALS wears many disguises, and maybe that's why I read something and feel positive, and then read something else and feel completely frantic.
1) I've read that the "pop-pop-pop" fasciculations all over the body are a "good" sign that points away from ALS because ALS related muscle twitching is more of a wave or "bag of worms" undulating up and down one particular muscle. And yet I've read some information that ALS twitches started as just that - the 'pop-pop-pop" kind. So should I feel comforted that I'm a "popper" and not an "undulator" or no?
2) I've also read that having fasciculations everywhere is a sign that points away from ALS because, 'you're whole nervous system just doesn't go haywire all at once", and posts that have said ALS associated fasciculations are primarily in the muscle currently being negatively effected. But to the contrary, have also read a few posts that say their diagnosed ALS did/does have muscle twitches all over, not just designated in say a calf muscle. So which is it?
3) I also read that, "ALS is not painful". Should I then feel good so-to-speak that my leg and now the arch of my right foot is so sore from cramping all night long? Or is it not a true statement that ALS is not painful?
4) And one final notation / question: Steven Hawking is a diagnosed PAL.....and has been for FORTY YEARS. I've Googled him multiple times, but no article seems to address why or better yet HOW he has survived (and according to his own statements lived quite happily) with ALS for so, so long. He surely must be the longest documented survivor with ALS. I wonder if anyone knows if he's been (or being) studied from a medical perspective. Maybe somehow he holds a key to living long with ALS? Just a thought . . . :-?
My former thread was "Terrified Mommy of 1 Yr. Old".....still applies but I have new questions so thought I would start a new string.
After reading (and reading, and reading!) I'm getting confused. (As an aside to other folks who have answered my questions, thank you SO MUCH. I am now scheduled to see a neuro but cannot get in for another month which feel like forever) What I know at the very least is ALS wears many disguises, and maybe that's why I read something and feel positive, and then read something else and feel completely frantic.
1) I've read that the "pop-pop-pop" fasciculations all over the body are a "good" sign that points away from ALS because ALS related muscle twitching is more of a wave or "bag of worms" undulating up and down one particular muscle. And yet I've read some information that ALS twitches started as just that - the 'pop-pop-pop" kind. So should I feel comforted that I'm a "popper" and not an "undulator" or no?
2) I've also read that having fasciculations everywhere is a sign that points away from ALS because, 'you're whole nervous system just doesn't go haywire all at once", and posts that have said ALS associated fasciculations are primarily in the muscle currently being negatively effected. But to the contrary, have also read a few posts that say their diagnosed ALS did/does have muscle twitches all over, not just designated in say a calf muscle. So which is it?
3) I also read that, "ALS is not painful". Should I then feel good so-to-speak that my leg and now the arch of my right foot is so sore from cramping all night long? Or is it not a true statement that ALS is not painful?
4) And one final notation / question: Steven Hawking is a diagnosed PAL.....and has been for FORTY YEARS. I've Googled him multiple times, but no article seems to address why or better yet HOW he has survived (and according to his own statements lived quite happily) with ALS for so, so long. He surely must be the longest documented survivor with ALS. I wonder if anyone knows if he's been (or being) studied from a medical perspective. Maybe somehow he holds a key to living long with ALS? Just a thought . . . :-?