ALS Functional Rating Scale

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Learn about ALS
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how accurate is this scale as a way of looking at progression?

my son filled this out and he scores a 32, has been experiencing symptoms now (progessive) for roughly a year.

I know that the progession can slow, speed up, plateau etc. But how accurate in general?

thanks.
 
also my son hasn't been diagnosed with ALS. Just wanted to say that. He's going for his first nerve conduction in a few weeks. Neuro suspects he may have MND. I'm praying not.

Neuro suggested the ALSFRS. He believes he scores a 32. Notices symptoms about 14 months ago.
 
Hi Sherry,

The ALSFRS is a useful tool for an illness that has few other metrics such as biomarkers to determine progression. Of course it only applies for persons who do have a MND and at this point your son is undiagnosed and will hopefully get a more treatable diagnosis. The score provides a snapshot of relative impairment and, when determined repeatedly over time, can provide a pretty useful measure of progression rate. Most PALS find their progression, particularly for limb involvement, to be fairly constant.

Hoping for the best for your son.

John
 
Thanks, John1.
Say one is diagnosed with ALS. Do you trace back from the time of diagnosis, or is it once you are diagnosed you trace back to the first time since onset of symptoms (it says "how many years since onset of symptons", so I'm assuming the latter).
I'm only asking this in case my son is diagnosed. Thanks.
 
they are often two clauses of the one sentence... for instance " I was diagnosed with MND in April, but my symptoms started in January of 2008."
 
they are often two clauses of the one sentence... for instance " I was diagnosed with MND in April, but my symptoms started in January of 2008."

I was talking specifically in relation to the ALSFRS, and how it works. But I see what you're saying.
 
Thanks, John1.
Say one is diagnosed with ALS. Do you trace back from the time of diagnosis, or is it once you are diagnosed you trace back to the first time since onset of symptoms (it says "how many years since onset of symptons", so I'm assuming the latter).
I'm only asking this in case my son is diagnosed. Thanks.
Shirley,

Your assumption is correct. If he can recall the answers to the various questions at various points in time going back to symptom onset (when presumably his score would be near perfect), then by all means fill it in for various times and he will get an inkling of his progression rate to date.
 
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