What's Your EDSS Number?
 

Expanded Disability Status Scale

http://ms.about.com/od/multiplescler.../a/ms_edss.htm


I'm at a 6.5 according to my last Neurologist visit. Has your Neuro given you a number yet? If so, do you agree with it or feel like it should be more or less?

Have never been given a number.

With love, Erika

I'd give myself a 7. I'm hoping to get back to a 6.5.:)

Never been told

Last year my neuro said it was very low...around one.

My neuro has never mentioned it, nor have I asked. But I would be a 6.

I was under the impression that SS looked at it when determining whether you were approved for disability. Maybe it's different in different states?

Could well be. I'm not on Social Security disability, but CSRS. I was a fed. :cool:

It looks like I am a 5. How far of a distance is 100 meters?

Mine is very low as well

A little over 100 yards.

Myself? some where above 6.5, LOL I am not liberal enough to call what I do walking. A manual wheelchair is beyond me, although I stagger around the house at time for short periods. The quad cane, walls and counters are my friends.

Me, too! I think I seem worse when I go out somewhere because my usual "props" are gone....the walls, furniture, counters, predictable terrain. At least that's what I'm telling myself......:o

Never been tested or had a test offered or suggested. Been on SS Disability since '04, I think.

I would think the results would change from day to day. For me, even hour to hour depending on what activity I just did.

I have never been given a number either by my neurologist. Mine would also depend on the time of day. I am guessing I am somewhere betwen 4.5 and 5.5

I'm assuming that the doctor probably looks at your overall condition and makes a determination based on several months of data.....not just that particular day he gives you the number. But, I'm really not sure so you'd have to ask the Neuro how it's determined. I saw mine on a copy of my medical records. Otherwise I'd not have known what mine was either.

My old neuro never gave me one either, but I've rated myself from time to time. I watched mine scurry up the ladder, in the last 20 years. Before my bad attack in 1993, I was about a 2.

So how would you gals and guys rate yourself? Who would know better than you?:)

Most of the time I'm a 3.5-4.0; but when in a bad flare, it has gone up to a 6.0.

With love, Erika

I have never been given an official number, on my first visit to a neuro in late 2004 one of the first things he said to me was " you don`t walk very well " LOL did you think I just came to visit? My PCP didn`t think so either and referred me to you.

On the bright side? he said I needed to be in a wheelchair (electric) and started the paperwork, and it only took two years to finally get everything done right so I could get one. LOL

I don't think my neuro wants to put that number in my head...but one thing I've noticed--during my exams, he no longer makes me perform the worst test for me. He used to have me stand with feet together, arms extended, then close my eyes. I would immediately fall into his arms.
Since I have both bladder & bowel problems, as well as dragging foot & cognitive issues serious enough that prevent me from working, I'm not sure but I would suppose I'd be around a 3 or 4...but I can't really figure it out...numbers:rolleyes:

6.5 for me.

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....:mad:

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.:hug:

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:D

@ Jane..:D:p:D 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.:D:D. My PT is working.:Dancing-Chilli::Dancing-Chilli::Dancing-Chilli:

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.