I hope that I'm not imaging this.

Status
Not open for further replies.

terrics

Member
Joined
Jul 15, 2010
Messages
19
Reason
Loved one DX
Diagnosis
05/2010
Country
US
State
New York
City
Bellport
I went out to lunch with my friend and I think her speech and drooling are better. She asked the waitress if there was a way to have her food blended. The waitress said they didn't have a blender, so my friend ordered salmon with some kind of sauce and got some extra sauce. She ate fine and drank a soda. She started on the rizule?( Spelling) 2 weeks ago. I thought this medication only extended life a bit? She, so far has no breathing problems. Her legs and arms are strong. Her symptoms started about a year ago. Neuro told her she has a little over a year to live. Do you think it is fair for a Doctor to tell the patient how much time they have left? MD can't possibly know for sure. Is it possible the medicine is helping?
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,540
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Riluzole slows progression, but I don't believe it improves anything.

I think doctors should give the averages, but not predict. There is absolutely no way to know for sure how long a PALS will live. It sounds like things are a little better now, for which I'm sure you are grateful. Take the good days and don't let anyone assign an expiration date!
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,772
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
It is extremely rare to see improvement with riluzole. When it happens it tends to be in people who received very early treatment. It happened to me and my neuro also heard about it happening to someone else. They do not understand how it happens as it is not an expected result. I hope your friend is lucky. My experience was improving slowly for several months and it took a total of 10 month from start to decline back to the point I was at when I started riluzole. I am extremely grateful for those months
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,540
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Thanks for correcting me, Nikki! Any improvement is a wonderful gift.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Perhaps that doctor can point out to your friend the expiration date he found on her...
 
Status
Not open for further replies.
Top