ALS Functional Rating Scale predictor

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allformom

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Joined
Nov 24, 2013
Messages
11
Reason
Loved one DX
Diagnosis
11/2013
Country
US
State
va
City
chesterfield
So mom had her first follow up visit since the actual diagnosis..we were told on a scale of 48, she's a 23 and this is in the suspected 8 months she's had it..don't know a ton about ALS but seems lk a pretty scary number to me! Neurologist said it definitely makes him concerned..so can someone tell me what does that mean!?!
My thoughts as a number person
48-23=25
25/8=approx. 3 points a month
which on a scale of 0-48 doesn't feel good!
b/c to me 23/3 points per month is about 7-8 months..so does that mean that's what they suspect she has left?
 
ALS Functional Rating Scale is the test he was using in all likelihood. I'm 28 after 10 months so pretty much midline. not sure how much this means specifically as to outcome.
 
Thank you for the link. I found that I have two different scores - higher with the - R added. Could anyone help with the significance of these numbers. I am about midpoint too, higher with the -R, onset about 3 1/2 years.
I'm very sorry about your mom's progression.

Linda
 
Don't put 100% faith in that scale it is just a reference.
 
Put less concern over a number, and more on attitude!
Never underestimate the power of a positive mindset!
 
also positive mind set will increase your score, negative mind set will decrease your score. these are just numbers, how do you personally feel
 
the -R is that they revised the scoring system if you note...one is against a score of i think 48 and the other against a 40..something like that..so you can compare apples to apples
 
I am sorry that your mom has ALS. The math does not work, because the scale is not that precise and ALS progression varies. Hope this helps.
 
The quiz for determining the score (for original and -R) is on line so you can double-check their work -- it may be linked above or Google. This scale is limited in several key ways. It is not a predictor of life expectancy. It was developed, as most are, in expectation of a need for agency-approved outcome measures in clinical trials. There is some literature around key milestones that might in the aggregate mean you have a median 6 mos left or whatever but that research is seriously flawed as well, unavoidably.

But if it helps, the average loss of points per month for pts studied is 1.x depending on the database and you don't know what her score was eight months ago. Diagnosis with a perfect score would not be the norm. Go on Patients Like Me if you want and check out everyone's FRS curves...she could have many years left. And the curve is not a smooth one, regulatory submissions notwithstanding. Just deal with needs as they threaten/occur. Your mom is lucky to have you at her side.
 
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