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EDSS

I’m wondering about the EDSS.

I have had a copy of my consultant’s letter from my last appointment today where he has given me a grading. Not knowing anything about it I read up on the MS Trust website.

It strikes me that it’s all mobility related and takes no account of fatigue, cognitive skills etc.

Not only that my “score” bears no resemblance to my day to day life. But then my consultant’s view is that I’m not all that bad (he should try looking from my perspective !)

Is this worth bothering about ? Is it ever important for any treatment or benefits reasons ?

Thanks

Janet x

I wouldn’t worry about it, Janet.

I’ve only ever been tested once, at diagnosis, and it was recorded as 1.5 (very mild impairment).

Five years have passed, and I’ve never been tested again, and wouldn’t wish to be - especially as I find it inherently stressful to go go through any assessment where you’re asked to perform things that - by definition - you have difficulty with.

Standing one one leg etc? With my eyes closed? Pah! Luckily, I rarely or never have to do this in real life, so it doesn’t matter too much that I’m crap at it. But if I’m put on the spot and told I have to give it a go, I find it hugely stressful.

The EDSS scale has been criticised on grounds that it focuses disproportionately on walking, and ignores the numerous other problems people might have - whether it’s pain, fatigue, cognitive issues, or whatever.

Every neuro appointment, I absolutely dread being putting through it again. As they haven’t bothered in five years, it seems they have no strict criteria about how often patients should be tested, and it may be that they never bother again, unless I report dramatic deterioration, or request evidence for a benefits claim. I have seriously thought about declining to particpate, if they want to do it again, “just for the record”, as it gets me anxious for no reason, and I cannot really see the value to me of having some arbitrary disability score (which is sure to be worse than last time) recorded in my notes.

Perhaps I’m doing my favourite ostrich impression, but I’m very much in favour of minimising stress wherever possible, as I know it makes my symptoms worse. So unless I can see a very clear benefit of being put through a test that, let’s face it, I will fail - even if only in minor ways - I don’t feel inclined to go along with it.

I’ve no idea whether it carries any weight with the DWP. So far, whenever I’ve done any self-administered tests to check whether I might be eligible, it comes out as not a cat in hell’s chance. In DWP terms, I’m fit and well, and there’s no reason I couldn’t be doing a 40-hour week + commute.

So I’ve never found it necessary to collect evidence in support of a claim that clearly wouldn’t succeed anyway. If I ever reach the point it looks like I might be borderline for benefits, instead of clearly having no hope at all, I might have to think again about whether it’s in my own best interests to request EDSS evidence. But until then, what’s the point of subjecting myself to the stress, to get a statement proving I’ve got worse?

I know I’ve got worse - I’m not stupid. But I don’t know who benefits from a piece of paper saying so. I also know it can’t capture many things I’m having problems with, like pain or fatigue.

In fact, these have never featured in the write-up of any consultation I’ve ever had, despite being my two greatest problems. Anyone going through my notes would have only the evidence that I’m prescribed a lot of painkillers (by my GP, not my neuro). I don’t think my neuro notes have ever explicitly mentioned the word “pain” anywhere. There seems to be a reluctance to acknowledge it’s even caused by MS, so apparently I’m hurting all the time from nothing. :frowning:

Tina

x

i had EDSS testing some years ago, my thoughts were “what a load of bllcks”.

i’ve never needed it and never used it, mainly because i have lost the paper with it on.

it’s totally up to you but, like tina, i found it stressful and don’t wish to put myself through it again.

i have discussed pain management with my ms nurse and also fatigue.

best to put it out of your mind and just get on with your life.

be happy

carole x

These neuros need to live in the real world,i know for a fact when i go for my yearly check up,they think i am doing ‘fine’ when infact i am in bed most of the day, every day and can do very little,when i tell them this i just get a blank expression from them.

To me they are like the rest of the population,they cant see the full picture.

I agree, but at the same time, I think it’s important to recognise they see a very wide spectrum, including the most aggressive cases, so everything they say is relative.

If somebody walks in under their own steam, five years from diagnosis, still with no stick, and no outward sign of disability, then the neuro isn’t lying when they say: “You’re doing very well!” The unspoken part of the message is: “…compared to some I see.”, so I think we always have to view it in that context.

I spend a large part of every day in bed, as well, but apparently, that’s “due to my drugs”. Funny that, as my GP looked it up in my notes, and found I was already complaining of fatigue, before I was ever prescribed any drugs. I get the impression they will try to pin symptoms on any cause at all, rather than the one thing you’ve actually been diagnosed with.

Tina

x

2 Likes

Hi, nah dont take too much notice of it. Although I dont have MS, but a very similar condition,.according to the scale, Im not that far off being written off....sod that! They dont know my Boudica side.....nor anyone elses. Just keep fighting yeh?

luv Pollxx

1 Like

Hi when i was going through a tribunal process for my pip my score on the scale was taken into account by the doctor on the panel , not sure if it swayed anything but i was awarded in my favour .

Katy

1 Like

Yes, the EDSS is a totally crap scale!
Trouble is that it measures exactly what it is intended to measure - and does it very well.

The real problem with the EDSS is that it is “understood” by a lot of people who do not know what it is intended for - and used for all sorts of things. The " cop-out" clause is that it refers to “functional systems”. You can regard cognitive processing as a functional system, or vision as a functional system - but then get side-tracked by the over emphasis on mobility.

It is the switch from “systems” to “mobility” that throws a lot of people. In terms of statistics, it is very naughty to use an equal interval scale (which the EDSS does) to measure things that are really a continuous variable (I quote from EDSS 4.5: “able to work a full day, may otherwise have some limitations of full activity”. Now a full day varies considerably depending on the job, and the culture, and the country, so that bit of the EDSS is really only good for the US. And just what “limitations of full activity” means needs to be considered against whatever “full activity” means. So some bits of it are very subjective, and some bits of it are very well defined.

Yes, the EDSS could be improved on. It would probably take about 18-24 months for a full-time researcher to develop a basic scale, and another 6-12 months to get people to use it. then one would have to get a number of people to use it in a test sample of MS patients to see if they came to the same conclusion (inter-rater consistency). I know that there is some software that could help with this (I helped develop some of it), but it would not make a lot of difference to the timescale.

In short, we are stuck with the EDSS.

Geoff

It looks like a nonsense scale, and ‘none of the above’ would be my score at a guess because none of the definitions applies fully. Guessing is all I can do as no one has ever shown any interesting in measuring it, which suits me fine.

Alison

1 Like

is it only for measuring ms, or all neurological conditons?

pollx

The EDSS was intended solely for measuring MS, Poll.

At one time it was used for measuring progression - a change of one point over one month (by two separate assessments) was considered to indicate a progressive condition.
OK, so tell me, who sees a neuro every month? Americans, paying or paid for, thats who.

Geoff

cheers Geoff.

pollx