My neuro never mentioned it, but this is interesting...I'd actually never heard of it before!

Of course, there is our regular disability scale, and our "relapsing/remitting" scale. In other words, some days I'm able to walk a bit, and other days--or weeks--I'm not able to walk much at all!

So while the underlying disability level remains constant, there are some things that we may be able to do one day, and then find that we can't even attempt to do a day or a week later...

And so it goes with this messed-up disease....

The scale doesn't seem to take sensory symptoms in to account.

I'm a 1.5 - 2 at my visit. They graph it and give me a copy if I remember to ask.
ANN

WOW lucky bum. Hope it stays in remission forever, Ann.

EDSS is used a a tool in giving a picture of level of disability on the day it is evaluated (although some MDs use it to capture the overall status status of a patient) - usually something in noted a medical records or trial paperwork- but often not stated outright to a patient (according to my neuro & neuroPT). It can change up or down over time - thus it helps show worsening or improvement.

I am a 6.5 but my doc said there is a big jump between 6.5 and 7 on the scale and I would be about a 6 3/4 (if it existed) LOL He also said not to worry about it, as I am who I am, not merely a number on some scale {gotta love him for saying that!}. If you were to ask me what I am I would say:

one heck of a nice gal; charming, witty, extremely good looking & modest to a fault

@ Jane.. So True!!

never was told about this before but what my drs did say is that MS is not deadly???

As of today I'm back to a 6.5.. My PT is working.

There are probably very few deaths overall directly cased by the disease, probably more from the resulting boredom or depression?

The question hasn't come up with a doctor, and I'm not going to bring it up, but I'd say I'm at 5.5. An infection or a fall would change that but I try to avoid those.

I've never been told what mine is but in looking at the chart it varies between a 5 and 7. I agree with Ann. This scale doesn't take in to account sensory issues, nor does it take in to account the arms and hands, vision, and cognitive issues. It seems to be primarily based on ambulation. One may be able to ambulate ok but not be able to use their arm(s) to carry out their activities of daily living. Fatigue and fatiguability are also not included in this scale.