ALS Functional Rating Scale predictor

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ladave

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While surfing the net I came across the following website:

http://www.outcomes-umassmed.org/als/alsscale.cfm

It contains an easy do-it-yourself method for determining where you score on the ALS Functional Rating Scale (I'm somewhere between 43 and 44 out of 48 depending upon how I judge my ability to cut food). It also has a "predictor" of how you will progress. How valuable such a predictor is with such an unpredictable disease is debatable, but it is interesting nonetheless and I thiought I'd share it.

Dave
 

Al

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I got a 27 on the frs out of 48 and a 31 out of 40 on the frs-r scale. So on one scale I am half way there and on the other I am 3/4 of the way. Not sure where there is but I guess I'm on the way.
 

Granny

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Hi guys,
Al, I am right with you on the first scale at 27. On the second rating I am 35. Stupid question-what does the R stand for in the second rating?
Thanks for the website, Dave.
Leah
 

ruby ben

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Scale

It was fun but I agree with Granny - what does the R stand for?

I am at the 3 year mark and scored 37 on the first and 45 on the second..........ruby from vancouver
 

rcharlton

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I got 33/40 and 41/48.

Looks like Ruby gets the gold star so far - Did you stay up all night studying or something you teacher's pet! :eek:)

This is the kind of thing that totally freaks me out about ALS.

For the most part - I do a pretty good job about remaining positive. Accepting what's happening to my body but not dwelling on it - I've said this before - in a lot of ways I've never been happier than I am now.

But when I am presented with something seemingly innocuous like that graph on this web site - my initial thought is "hmmm...pretty colours"...but then I start thinking about what all those little black dots represent - and why there are a whole bunch of dots around years 1 and 2 - but fewer and fewer dots towards year 5 - and why the graph stops at year 5 - it catches me a little off-guard - and I get a little freaked out.

I'm OK now though...
 

ladave

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I sure wish you hadn't pointed that out:)

Dave
 
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Al

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Doesn't exactly make me want to jump for Joy either. That is if I could jump. LOL.
 

John1

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Al said:
I got a 27 on the frs out of 48 and a 31 out of 40 on the frs-r scale. So on one scale I am half way there and on the other I am 3/4 of the way. Not sure where there is but I guess I'm on the way.
Al, you must have misread the results, your score is impossible. The score for the first scale based on 40 points is calculated from your answers to the first 10 questions; the second score, (for the ALSFRS-R )is out of 48 points and is scored by adding the points from the first 10 questions to the score for the last 2 questions. The last two questions emphasize respiratory issues. BTW I got a 27 on the first and a 33on the second scale.

I also noticed you said you were 3/4 of the way there for the 31 of 40 scale. Not so unless by "there" you mean unaffected. 40 out of 40 would mean you had no symptoms. 0 out of 40 would mean, well, I'd rather not go there.
 

Al

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Well in my defense it was 2;30 am when I did the test. Guess I'll have to do it again.
 

rcharlton

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Perhaps Al was cheating.

He may have found the answers to the questions but memorized them in the wrong order.

Good thing John caught that :)

Maybe we should make Al stay after school...

Better yet - we should make him write out 100 times:

"I only hurt myself when I cheat on my answers to the ALS Functional Rating Scale"

Actually - having to write that 5 times would be a chore for me...
 

ruby ben

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Laughs

When reading your answers and comments - thanks for the laughs!..............ruby from vancouver
 

margeo55

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als functional rating score

my scores were 24/40 and the second 32/48 not very promising after 1 year diagnosed
 

rcharlton

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Hey Marge,

The starting point is from when you first noticed ALS symptoms, not the date of your diagnosed. Maybe that will improve your scores.
 
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