EDSS

[Wobbly]

Hi there, it's been awhile I hope all is well as could be, I have a question I noticed at the Neuro office they put down a EDSS number 6, what does that mean, I should have asked but had a few things on my mind.  

any ideas?  
thanks
wobbly

[torikat32]

I got the information from about.com I use this site often it seems to be a good reference tool to use

[Sparkysarah]

Hi there and good to see you back.  If you google EDSS you can find further information about each of the different stages and the estimated length of time that one may stay at this stage. I talked to my neuro this week about the scale and he said that it is not ideal but it is the best that is available at the moment.

However do bear in mind that two different doctors may examine you and come up with a different figure as it depends on the neuro examination on the day. During the last year I ahve been scored at 2.5, 3.5 and my most recent one is 3.  I do not think I have changed that much and have been seen and assessed by two different neuros.  It is also vague in that it is only a rough guide as we are all different, the way our condition progresses is individual to us and we may stay at a certain level for many years.

Hope you are keeping well and come back soon

Love Sarah ;)

[Wobbly]

thank you for the answers, that's exactly what I needed.  

nice that I have been missed, I missed you guys too, just been busy around here and haven't had a chance to even look at this forum.  

I hope to be back asap... just a few more thing to finish and I'm comin back if possible.

Miss you all and hope all is well.  Summer is finally coming here and can't wait for more sun.... not the heat, just sun.

take care and talk soon

wobbly

[rendean]

HI Wobbly!!!

So good to see you on the forum again!. Torikat already gave the answer on EDSS as I understand it. I just wanted to say "Hi"

You've been missed!
Ren

[Lulu54]

Hi torikat, can you do us a favor and back up and give us the citation/reference point for this listing.  I know it's right, but we have to be sure to give the credit for the original source. thanks.

Wobbly, we put a lot of stock in numbers, but please remember those can change and often do for the better.  Were you having a tough time when you were at the neuro's?  Have you been in a relapse?  The EDSS should also be a point of reference from where  you were your last visit compared to this time.  

You may want to go back and ask the staff at the neuro's for the total explanation of the EDSS and how it relates to you.

Don't be a stranger for so long, ok?

hugs,
Lulu

[torikat32]

The Expanded Disability Status Scale (EDSS) is a rating system that is frequently used for classifying and standardizing the condition of people with multiple sclerosis (MS). While it has many shortcomings and is complicated to use and understand, I think it is important that people with MS at least know what it is and how it is applied

The score is based upon neurological testing and examination of functional systems (FS), which are areas of the central nervous system which control bodily functions. The functional systems are:
Pyramidal (ability to walk)
Cerebellar (coordination)
Brain stem (speech and swallowing)
Sensory (touch and pain)
Bowel and bladder functions
Visual
Mental
Other (includes any other neurological findings due to MS)

The Expanded Disability Status Scale (EDSS)

0.0: Normal neurological exam.
1.0: No disability, but minimal signs in one functional system (FS) are present.

1.5: No disability, but minimal signs in more than one FS are present.

2.0: Minimal disability in one FS is present.

2.5: There is mild disability in one FS or minimal disability in two FS.

3.0: There is moderate disability in one FS or mild disability in three or four FS. However, the person is still fully ambulatory.

3.5: The person is fully ambulatory, but has moderate disability in one FS and mild disability in one or two FS; or moderate disability in two FS; or mild disability in five FS.

4.0: The person is fully ambulatory without aid, and is up and about most of the day (12 hours) despite relatively severe disability. He or she is able to walk 500 meters without aid or rest.

4.5: The person is fully ambulatory without aid, and is up and about much of day. He or she is able to work a full day, but may otherwise have some limitations of full activity or require minimal assistance. This is considered relatively severe disability. Able to walk 300 meters without aid.

5.0: The person is able to walk 200 meters without aid or rest. Disability impairs full daily activities, such as working a full day without special provisions.

5.5: The person is able to walk 100 meters without aid or rest. Disability precludes full daily activities.

6.0: The person needs intermittent or unilateral constant assistance (cane, crutch or brace) to walk 100 meters with or without resting.

6.5: The person needs constant bilateral support (cane, crutch or braces) to walk 20 meters without resting.

7.0: The person is unable to walk beyond five meters even with aid, and is essentially restricted to a wheelchair. However, he or she wheels self and transfers alone, and is active in wheelchair about 12 hours a day.

7.5: The person is unable to take more than a few steps and is restricted to wheelchair, and may need aid to transfer. He or she wheels self, but may require a motorized chair for a full day's activities.

8.0: The person is essentially restricted to bed, a chair or a wheelchair, but may be out of bed much of day. He or she retains self care functions and has generally effective use of arms.

8.5: The person is essentially restricted to bed much of day, but has some effective use of arms and retains some self care functions.

9.0: The person is confined to bed, but still able to communicate and eat.

9.5: The person is totally helpless and bedridden and is unable to communicate effectively or eat and swallow.

10.0: Death due to MS.

[figuerpa]

i believe it stands for expanded dissability status scale. it is how the doctors marks what your disability level is. I could be wrong on this but I read about it somewhere. not sure where or when though lol.

I am sure someone else will come in and tell us if I am wrong. But you should make a note of it and ask at your next visit.

Paula