ksbigbrother
Member
- Joined
- Aug 13, 2010
- Messages
- 10
- Reason
- Loved one DX
- Country
- CA
- State
- BC
- City
- Vancouver
Hi All,
My younger brother (42) was just diagnosed with ALS, needless to say we are all in shock and searching for info/treatments/answers. There seems to be a lot of "internet voodoo" when it comes to cures/treatments. So I have a few questions, if people would be so kind to answer:
He noticed some twitching in his chest in April/10- should we expect that it actually started long/short time before that?
He now (Aug/10) has full upper body twitching - no loss of speech though,and his left arm is going numb (pinky and ring finger have 0 feeling) he has experienced extreme loss of strength in his upper body. Does this seem like fast or slow degredation?
I understand that no two people progress at the same rate, just trying to get an idea of what to expect.
Everyone I talk to seems to know someone who "had ALS for 20 years", this seems at odds with everything I have read on averages- is this real?
(the lady at the ALS Society here in Vancouver said that many people attribute "the first sign" to normal trip/dropping/muscle twitch etc)
Re ericiswinning.com:
This person seems to be very much alive after having ALS for 18 years, is he one in a million/ does he have a very rare case/does his regiment work/ does he have a very slow progression?
What are the stages and how long do the stages last ? are they equal stages? (i.e if someone lives for three years, is it one year normal, one year not bad, last year horrible)
I read a story by a woman who's son had ALS, and she said the twitching was a sign of the next part of the body to go. Have others found this to be the case as well?
The night my brother was diagnosed (2 days ago), he said he felt like his whole body was twitching, is this likely to be real or just psychosomatic. If it is real should it be taken as a sign things are going to get a lot worse quickly? I guess I'm asking if he needs to do all the things he wants to do right now, before he is unable?
Thank you in advance for any replies
God Bless
My younger brother (42) was just diagnosed with ALS, needless to say we are all in shock and searching for info/treatments/answers. There seems to be a lot of "internet voodoo" when it comes to cures/treatments. So I have a few questions, if people would be so kind to answer:
He noticed some twitching in his chest in April/10- should we expect that it actually started long/short time before that?
He now (Aug/10) has full upper body twitching - no loss of speech though,and his left arm is going numb (pinky and ring finger have 0 feeling) he has experienced extreme loss of strength in his upper body. Does this seem like fast or slow degredation?
I understand that no two people progress at the same rate, just trying to get an idea of what to expect.
Everyone I talk to seems to know someone who "had ALS for 20 years", this seems at odds with everything I have read on averages- is this real?
(the lady at the ALS Society here in Vancouver said that many people attribute "the first sign" to normal trip/dropping/muscle twitch etc)
Re ericiswinning.com:
This person seems to be very much alive after having ALS for 18 years, is he one in a million/ does he have a very rare case/does his regiment work/ does he have a very slow progression?
What are the stages and how long do the stages last ? are they equal stages? (i.e if someone lives for three years, is it one year normal, one year not bad, last year horrible)
I read a story by a woman who's son had ALS, and she said the twitching was a sign of the next part of the body to go. Have others found this to be the case as well?
The night my brother was diagnosed (2 days ago), he said he felt like his whole body was twitching, is this likely to be real or just psychosomatic. If it is real should it be taken as a sign things are going to get a lot worse quickly? I guess I'm asking if he needs to do all the things he wants to do right now, before he is unable?
Thank you in advance for any replies
God Bless
