Last reply 5 years ago
Eds scale?

Hi all,
I’m not diagnosed yet but this interested me. They talk about the eds scale going up as the condition gets worse & progresses & they class 10 as dead due to ms. But yet I thought ms couldn’t & doesn’t kill you so what’s that all about? Rare exceptional cases? Sorry for such a horrible post but it’s bugging me now.

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5 years ago

Wow! This is going to be an interesting Topic.
MS is not seen as a terminal condition, although I can see that some MS symptoms could well contribute to your death.
But, there again, everyone is working their way down their own form of EDSS, as we’re all going to “shuffle off this mortal coil”.
I would put myself at about 6.5 on the EDSS and quite frankly, if I started to progress to 8.5 or beyond, I reckon I’d be glad to get to 10.
But, the EDSS has to start somewhere and therefore, it has to finish somewhere.
Life is a journey, so enjoy the ride. 🙂

5 years ago

Well how depressing!
Do they expect then that by the time that ms people reach 10 we would have approached being dead anyway just like anyone without ms?

5 years ago

It is a depressing thought, but like I say, it’s not just MS, life can be like that too.
Let’s just hope that this Siberian breeze is the last blow of winter. Roll on Spring and we’ll all feel better and start smiling again. 😉

5 years ago

Don’t they also say that some people’s ms can just fizzle out & not get any worse? Yep, roll on the nicer weather x

5 years ago

With MS, nothing is certain, but statistics suggest that the majority of MSers won’t progress much past 6 on the EDSS.
But, that will all be determined tomorrow and we have today to enjoy first! 😀

5 years ago

Hi there boodle06

I only learnt about EDSS the other day, when I had my annual apiontment with my neuro. He didn’t actually come out and say “I consider you to be at 3.0 on the extended disability status scale” (check me and the fancy medical terms!), I happened to see it written on my notes. So being a nosey bugger, I was straight on to Google when I got back home.

I too was surprised to see the poor prognosis for those at 10.0 on the scale, as I thought the generally held view was that MS can’t kill you. But then I thought about it a bit more, and realised that as 0.0 is basically “doesn’t have MS” they needed an extreme at the other end. I guess they found one…

I also looked more closely at my score (which really is 3.0). According to the scale “There is moderate disability in one functional system or mild disability in three or four functional systems. However, the person is still fully ambulatory.” Indeed, I am “fully ambulatory” (although I am likely to end up flat on my face if I try to run) but I wouldn’t consider myself to have “moderate disability in one functional system” so I must be considered to have “mild disability in three or four functional systems”.

I was a bit concerned, as I wouldn’t describe myself as being at that stage. Then it occurred to me, at my worst during my last relapse, I probably did have “mild disability in three functional systems”. So it would seem that amongst those of us still RRMS or ICS, the EDSS is only useful for measuring how bad things got, rather than how bad things are today. I would reckon I am currently at somewhere between 2.0 and 2.5.

Also, EDSS is used to score your suitability and eligibility for CRAB drugs.

I’m going to stick my neck out here – and say that I very much doubt we have anybody on shift who is much over stumbler’s 6.5 (see you win stumbler!! – (for those concerned about my lack of sensitivity, this is a private joke LOL )). I might be wrong, but having spoken to a lot of shifters, that’s just my gut feeling.

I’m going to stick my neck out even further now (I’ve never been good a quitting while I am ahead), and say that as time goes on – due to ever improving treatments and DMDs – the number of people reaching the higher numbers on the EDSS is going to decrease. I know that there are people who are having a really really shit time with MS (and even more so back in history), but I’d be surprised if many of us have it as bad as some have had in the past. Not trying to be insensitive here, just saying it as I see it…

So I suggest you just see your EDSS score as simply a measurement. Something that your medial experts are going to use to measure your MS over time. Rather like a MRI scan.

Hope this helped

Mark 🙂

PS I wish it was June too…

5 years ago

A good analysis of this system, Mark.
So, what do I win? 🙄

5 years ago

During my last relapse I too saw my notes and saw that I was classed as EDSS 4.5 which I didn’t like very much. Having talked to my physio she pointed out that this was worst ever scenario (mid-relapse)and that I’d soon be back to … whatever I was before, which I don’t know. I spoke to the MS nurse about it and she told me that a) it’s perfectly possible to go DOWN the EDSS scale because MS is so vsariable and that b) in the scheme of things, the EDSS is not considered that important or that definitive. The ms research blog talks about the limitations of EDSS, because it’s based mainly on mobility, which as we all know is only part of the picture. In other words, it’s not really worth worrying about….!

5 years ago

I think that MS patients can die due to secondary effects of the disease, such as severe urinary tract infections due to inability to empty the bladder. I have also heard that lung infections can be fatal if control of the breathing muscles is impaired. These examples are rare and occur only to severely affected people.

On the plus side, drug research is improving our options to prevent relapses as well as possibly slowing or preventing progression. Do what you can to stay healthy, and maybe try enrolling in a clinical trial. Things are getting better for MS patients, much more so than even 10 years ago.

5 years ago

Hi all!
‘The MS doesn’t kill you’ quote. Like it, and suspect it is prob true for More then most people with MS, but like mentioned above, the issues surrounding MS could be fatal- not being able to swollow would be a big one, (advanced brain stem lesions- thank goodness rare) though I guess PEG FEED tubes are a possibility here- though not sure I would want one if I got that bad…
I had this out with my neurologist last time I saw him, writing on a referral ‘EDSS pre last relapse 4, now 5.5’. My argument was that I was only 2 1/2 months after coming out of a relapse, was still improving, and fluctuated daily, or even wildly within the day. How DARE he put a score in writing on that. He just raised his eyebrow at me. As a nurse I can see it would be useful as a tool to converse between health professionals. I have decided just to leave it as that. Though also as a nurse I want to know EVERYTHING: not sure this is actually helpful to my psychi though.
I did find this helpful though…:
I know the EDSS is a MS thing, but just for the fun of it, apply it to some of your friends… I have a girlfriend with psoriatic arthritis (advanced, on methotrexate) and another who is my grandmothers age (with the ‘normal’ associated ageing issues: suddenly EDSS of 5 isn’t that scary.
And what sort if hyper-fit perfect being has a EDSS of 0 anyway? Show me one…
🙂 Jas

5 years ago

Thanks for this topic guys, ive learnt somthing new! a nurse friend of my mums asked where i was on the scale and i had no clue what he was on about! like jas i like to know everything the docs are writing, whats going on ect ect. People think im wierd but it actually calms me down a lot to know whats what as i hate surprises.

thanks again

5 years ago

on the scale I would say i’m an 8 (can’t walk at all), so ner @stumbler I win! 😀 lol

Believe me that’s one thing i’d love to lose. I think it’s a scary scale to look at, but like other people have said, there has to be scale/list of different stages. I’ve actually just looked at it and scared myself.

I am very ‘active’, I do as much as I can so hope that things will just stay at this stage.

5 years ago

@babe2be, it gives me absolutely no pleasure to concede to you. 😐

5 years ago

am i the only one who hasn’t a clue wot this EDS scale IS?

5 years ago

There you go, @reddivine :-

Now you can consider yourself educated. 🙂

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