Thoughts on ALSFRS-r scores

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That is one important function for biomarkers and what is relevant to our discussion here. Biomarkers could also help with diagnosis.

the diagnosis ones are probably going to come from the FALS community but the trial ones need involvement of current PALS. Everyone who is able should seek out a biomarker study because the researchers need samples to work with
 
Being entirely subjective, it is almost a useless measure of ability. It kind of gives you an idea of how you see things going. It reminds me of the Pain scale. I've seen people say 10 to a stubbed toe. Having had gallstones, pulmonary emboli, and blood clots. I am familiar with intense pain. I wouldn't describe a stubbed toe as a 10. Others would. This is why it really doesn't tell you much.
 
I go round and round with my ALS clinic on the ALS/FRS scoring guide. There numbers definitely do not align with my numbers. For instance my PFT'S are above normal but I use a trilogy at night. Why you ask? Prior to diagnosis I had a sleep study done in 2016 and was diagnosed with mild sleep apnea. My current pulmonologist said somewhere down the line you'll need to use NIV so I'm going to transfer you now to a trilogy so when the time comes you'll already be acclimated. So because of this I lose a point. It's the same thing in additional categories, I have no trouble dressing, doing buttons, zippers, washing my hair etc. But because I say I'm just slower at it more points deducted. I finally told clinic not to give me my score anymore. I don't go by numbers I guage myself on ability.
 
Adding a question to this conversation about FRS.
My CALS, wife, and I have been doing our own FRS on a monthly basis and seeing a disconcerting decline of more than the normal 1 point per month. This past Thursday, I had my quarterly meeting at the clinic and they measured a 9 point delta since the last meeting 3 months ago, Dec. 30. So that shows a 3 point delta on a monthly basis.
What kind of change do others experience? Should we be alarmed?
Certainly, I guess I could level out there for some time, and maybe not.
Just asking this forum while I wait for my neurologist to reply to my related question.
 
You know how you are doing Al which I think is most important. That change is faster than average yes but you know what is driving those numbers. it must be more than one category I think but one change can knock you down in several categories - leg weakness can affect walking, stairs, dressing and turning in bed. Hand weakness writing cutting food and dressing. Etc.

you might have interest in the ROADS assessment Scale https://med.emory.edu/departments/neurology/programs_centers/emory_als_center/_documents/roads.pdf
 
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