I was looking at the paperwork my Neuro gave me after my appt. on Friday. He listed my EDSS as a 6 and he put "worsening" beside it.

Does anyone else know what your EDSS rating is?

http://en.wikipedia.org/wiki/Expande...y_Status_Scale

EDSS steps 1.0 to 4.5 refer to people with MS who are fully ambulatory. EDSS steps 5.0 to 9.5 are defined by the impairment to ambulation.
The clinical meaning of each possible result is the following:

• 0.0: Normal Neurological Exam
• 1.0: No disability, minimal signs on 1 FS
• 1.5: No disability, minimal signs on 2 of 7 FS
• 2.0: Minimal disability in 1 of 7 FS
• 2.5: Minimal disability in 2 FS
• 3.0: Moderate disability in 1 FS; or mild disability in 3 - 4 FS, though fully ambulatory
• 3.5: Fully ambulatory but with moderate disability in 1 FS and mild disability in 1 or 2 FS; or moderate disability in 2 FS; or mild disability in 5 FS
• 4.0: Fully ambulatory without aid, up and about 12hrs a day despite relatively severe disability. Able to walk without aid 500 meters
• 4.5: Fully ambulatory without aid, up and about much of day, able to work a full day, may otherwise have some limitations of full activity or require minimal assistance. Relatively severe disability. Able to walk without aid 300 meters
• 5.0: Ambulatory without aid for about 200 meters. Disability impairs full daily activities
• 5.5: Ambulatory for 100 meters, disability precludes full daily activities
• 6.0: Intermittent or unilateral constant assistance (cane, crutch or brace) required to walk 100 meters with or without resting
• 6.5: Constant bilateral support (cane, crutch or braces) required to walk 20 meters without resting
• 7.0: Unable to walk beyond 5 meters even with aid, essentially restricted to wheelchair, wheels self, transfers alone; active in wheelchair about 12 hours a day
• 7.5: Unable to take more than a few steps, restricted to wheelchair, may need aid to transfer; wheels self, but may require motorized chair for full day's activities
• 8.0: Essentially restricted to bed, chair, or wheelchair, but may be out of bed much of day; retains self care functions, generally effective use of arms
• 8.5: Essentially restricted to bed much of day, some effective use of arms, retains some self care functions
• 9.0: Helpless bed patient, can communicate and eat
• 9.5: Unable to communicate effectively or eat/swallow
• 10.0: Death due to MS

According to the above chart, I'm a 7 or between 6.5 and 7. You get the idea...

My neuro has never rated me, but I match up with a 6, I guess. I'm never sure what to say when the question is about "able to walk...without aid". I'll bet nine times out of ten (well, maybe 8...) I could walk across the lawn without my cane and not tip over. But it would be risky.

What does the FS mean? Thanks

Functional Systems

I am not even going to think about this list. I am fine...except for the tightness and pain, and walking like my 90 yr old FIL...

If I started looking at this thing for myself I would sit and cry. Im sorry you got such a high rating.

Since I've had it so long (SX @ 24 - DX @ 35 - now 71), I was trying to guide myself along the chart to see how I progressed.

For the first 11 years I was prob. a 1.5
After DX and the next 16 yrs prob. a 2.5/3
After 2nd DX-the next 9 yrs prob. a 4.5/5
From age 60 to now 11 yrs prob. a 6 to a 7.

NOT going any higher..

Back in about 2005, I had a neuro rate me at a 6.5 when I was really bad and could hardly walk with a cane. That was when they wanted me to use a rollator. Now, I would say I'm a 4.5 some days and a 5 or 5.5 other days. It just varies so much.

My current neuro never gives out an EDSS.

Some where between 6.5 and 8, bits and piece of all of them fit. I can still walk with a cane, that`s what I call it and I am sticking to it! 20 meters without resting? I wouldn`t bet on that!

I can`t use a regular wheelchair, my left arm isn`t pushing anything! I go in circles! I can take care of myself, but I don`t do anything for 12 hours except sleep at times!

I can still drive, get myself in and out of my van ok, I have a problem trying to climb out of small cars. I wouldn`t even think about trying to walk around a store, even holding on to a cart for support.