This Is MS Multiple Sclerosis Knowledge & Support Community

EDSS 1.0 - 3.0
Able to do regular activities normally
- Your in shock that you have been diagnosed with a chronic progressive disease.
-You think your life is over
- So many thoughts go through your mind
- Aside from all the mixed emotions you really have no disability so you just get on
with life
- Get on a drug and hope for the best
-Go online and meet others with ms
-still working

* Mood is positive after the initial shock*

EDSS 3.5 - 4.5
Moderate disability that starts to impair daily functioning
- starting to notice things are changing
-disability seems severe because your just not use to any at all
-after your at this level for a bit it gets easier and you think this is not so bad
-thoughts creep in of what if it keeps getting worse
-maybe I can beat this when you’re having a good day
-possibly starting to doubt the drugs your on and research alternatives
-learn to get by with the disabilities that you have and get on with it
-still working (this is huge in the whole mood thing)
-can’t help thinking what is going to happen to my ms

Mood is still good, not bad enough that you can’t overcome negative thoughts even though they are getting more and more frequent*


EDSS 5.0 - 5.5
Unable to do full daily activities, but still able to walk with out assistance
- the middle of the road
- start to think about can i keep working
- really getting tired
- takes a lot of effort just to do simple things
- relationship troubles may come into it
- reality is really setting in

I think at this level your mood really takes a hit, your thoughts become more relevant, it is all just getting too much. Just go away enough is enough


EDSS 6.0 - 6.5
Needs assistance to walk, such as a cane, crutch or brace
- had to quite my job
- realization that this is not going to go away
- will loose my license to drive
- money becomes an issue more than ever
- strains on the relationship get worse
- start to learn who your friends really are
- how do I keep my life together
- really miss the things I use to do

Mood and your ability to be positive is so hard, ms gives some windows where you just feel better than usual and it gives you the chance to be positive but that window always closes. This disease is progressive and the quality of your mood follows that progression side by side as your physical condition gets worse

EDSS 7.0 - 8.0
Needs a wheelchair most of the time but may still be able to walk a few steps around the home with assistance
- this as sad as it may seem is almost a relief
- I have finally gotten to where I always knew
- they show a girl here smiling and doing some paper work but there is so much more to it that
- you didn’t just wake up in this chair it has taken a long time and in this time you have been fighting every day, every minute and your tired and beat down
- can I learn to work at something from this chair or are there other things going on that won’t let this happen
- it’s like finishing a book
- well what now’! I’m young and still have a few years left lol
Mood at this point is pretty much set there are no more ups and downs, this is my life now so live or die. Happiness is hard to find, there is still some things that make you smile but they are far and few between, you really look to others to do stuff that you may enjoy almost like living vicariously through them.


EDSS 8.5 - 9.5
Bedridden most of the day; may have lost use of arms, and ability to communicate effectively or eat
- say no more

robbie,

Don't know where you got this, but I think it is a very accurate profile of the various steps in the progression of the disease. While reading it, I could imagine people who post here and how they think based on the severity of their symptoms.

This is just a really difficult disease to deal with.

gwa

Robbie,

Wow. That is hard to read, but also necessary for us all to read. It's not positive, it's not negative, it's just what's going on. Thank you for the reality check. No kidding. I'm at the 3.5 to 4.5 phase and I can't tell you how much you've hit the nail on the head. I've already corresponded with you and you already know how I feel about what's going on and how you deal with it. You're a tough son of a bitch.

The line -"maybe I can beat this when you're having a good day" really hits home with me. That thought goes through my head all the time as I wait to see if I slide anymore now that I'm on real Tovaxin and holding my breath and praying it works. Also, -"Can't help thinking what is going to happen to my MS". Another one that hits me square in the jaw. One of these days I'm going to read up on the how to do the quote thing, but the last sentence is especially true, especially the part about the neg. thoughts getting more frequent.

Thanks for taking the time to verbalize this. You obviously aren't having a good go of it right now, but thanks for taking the effort to put this into words. For some reason I feel compelled to print this and take it to my neuro. at my shot appt. next week. I've told him time and again that I'm staying on Tovaxin, but at the first sign of a relapse, I'm going to Johns Hopkins. I mean what you describe is what it does to your LIFE. Reading the EDSS in the raw is just what it does to your body and I'll be damned if I won't spend every red cent of my money and try EVERYTHING that is available right now.

Once again thanks dude, you're the man.

Lew

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took the pics and EDSS information from this web site http://www.mswatch.ca/community/section ... d3880c9517
the rest is just my own ms.i'm glad that it's worth reading.

Thanks Robbie!

I find it hard to express myself and explain exactly what it is I feel and what you posted was exactly right. I use a cane and may not be in a wheelchair, but I definitely am struggling to find those happy moments. As I look to the future, the outlook doesn't look good.

I can relate to being positive in the beginning, but now after 8-1/2 years of this disease I find it very, very difficult to be positive.

Thanks again for taking the time to post it!
J

Robbie, as the others have said this really describes what is happening to many of us here. I admire people like you that are able muster the internal fortitude to go through all of this. I am just beginning to be hit real hard. My neuro will not goive me a number, but I guess it is around 3-4. I am having real problems with balance, walking and even just standing up sometimes. I always have muscle coordination problems now and my strength is fading fast. The mental aspects of this crap ass disease can not be overstated. I do not think i will get back to how I was before my recent face plant and subsequent brain contusion. I often think that when I get real bad I will just roll myself on a long "walk" on a short pier. I often feel the" I can beat this" feeling for a few days or hours but as described the window closes and the reality sinks in. I am doing congnitive behavior therapy right now to try and regain some positive feelings and thoughts in my life. I wish you the best. Take care..G

What do the numbers represent? the 3.5 etc? I read about how they list progression buy ability to get around. Is that it? or is it leasions? I go in on Wed. and want to also ask you guys, what are the best questions to ask? It will be the day of my dx

Robbie this is brilliant, it is so accurate.
I am about a 2.5 at the moment, feel nearly guilty MS is so "quiet" but I actually have gone all the way up to a 9 temporarily, and about a 6.5 for a year at one stage. I completey agree that this was exactly how I felt at each different measure of MS.

EDSS numbers come from the Expanded Disability something Scale. Measurement of MS disability and functioning.

Thanks. I couldn't read it all. I know it's totally pathetic and weak but at the moment I just couldn't bear to read beyond stage one. Thinking about what the future could hold is too scary.

Wow Robbie,
I think everyone working in the field of neurology should be strapped into a chair and force fed this article until they know it off by heart! It really does sum everything up, although I can't help thinking that even then people wouldn't really understand unless they'd actually been through/are faced with these emotions.

Fiesta Frog, EDSS score is basically a measure of physical disability. I think the numbers up to 5.0 concentrate mainly on mobility, with numbers after that including other aspects which I think is a bit limiting considering how variable MS can be.

http://www.mult-sclerosis.org/expandedd ... scale.html another link to the scale. and a graph of average times at each level. there's something you don't see every day huh.

jimmylegs wrote:http://www.mult-sclerosis.org/expandedd ... scale.html another link to the scale. and a graph of average times at each level. there's something you don't see every day huh.

Don't take the chart about years of staying in each category too seriously. I should have died many years ago according to the chart.

Guess I had better get my "Bucket List" finalized soon.


gwa

i certainly don't plan to take it seriously! don't consider myself average anyway ;)

MrsGeorge wrote:Thanks. I couldn't read it all. I know it's totally pathetic and weak but at the moment I just couldn't bear to read beyond stage one. Thinking about what the future could hold is too scary.

One thing that you might consider doing is printing off the article and putting it in a drawer for future reference. If you progress to the next level, it would be a good paper to look at and reassure yourself that you are not losing your mind.

It does a great job of discussing the mental and physical problems one has to deal with at each level.

It is really accurate, in my opinion. I didn't pay a lot of attention to the last few stages, because like you, the info gave me the creeps, especially since I think the beginning stages descriptions are right on target.

gwa