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drrabbit

Expanded disability status scale (EDSS)

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drrabbit

Hi

 

I'm new here and sorry to ask a potentially stupid question. My wife was recently diagnosed with RRMS. As part of the work up her EDSS has been recorded in the notes and in letters. Because of her fatigue she rarely can manage 500m walking. There are some concentration issues and word finding issues which worsen with fatigue. Here swallow is ok most of the time but she cannot manage red meats without care. When we questioned the score given (0) we were told it is correct as fatigue isnt taken into account. Is this right, it seems bonkers to me?

 

Thanks in advance


Edited by drrabbit

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Sluggish
Marina

Welcome, although I'm sorry to hear your wife's been diagnosed with MS... There are also no stupid questions, especially when it comes to MS.

 

By the sound of it, you’ve already seen how EDSS is measured? https://www.mstrust.org.uk/a-z/expanded-disability-status-scale-edss

 

It would seem fatigue is indeed not taken into account, unless it’s considered as part of the rather vague “Other” functional systems (FS) category?

 

The MS Trust adds: “The scale is sometimes criticised for its reliance on walking as the main measure of disability.” Might this be the case with your wife?

 

Was it her neurologist who said her EDSS was 0? Does she have an MS nurse? If so, what does the MS nurse say about this?

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Marina

(belated DX in June '05, SPMS)

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drrabbit

What isn't clear from the mstrust page is what happens if mobility is limited by fatigue. It doesn't say pretend they are fully mobile, yet this is what seems to be happening locally.

 

A major problem with scales used in medical practice is that different individual health professionals will apply the differently and someone in any locality will have their say and so inconsistencies appear from place to place. Many hospitals dont have a MS specialist neurologist yet MS nurses may take their lead from the consultants present.

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Nindancer

Here's a DIY check that was recommended to me by a hospital:

https://edss.clinicspeak.com/#/welcome

Sonia x


Edited by Nindancer
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drrabbit

4 according to that, 0 according to local services

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Sleepy
Scully

Hello drrabbit, and welcome.

Sorry to be late to the party as it were...

It seems very strange to me that this scale varies so much between consultants, hospitals...in fact, everybody it seems.

I accept that in part the EDS scale is down, in part, to some interpretation, nevertheless, should it not be universal, in that everyone 'sings off the same sheet' ?

 

I've just completed the assessment using the link above, and it's come out at 6.5, which surprises me, as according to the experts I've never been over 4.5

 

I wonder if the DLA/ PIP ( aka, the flat earth society ) use this scale.....heaven help us all if they do....as I'm sure we would all be assessed as a big zero!

 

Scully


Edited by Scully
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They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Sluggish
Marina

In case anybody’s wondering, the online ClinicSpeak EDSS calculator was developed by the highly respected Prof Giovannoni of the MS Research/BartsMS Blog.

 

Multiple Sclerosis Research: ClinicSpeak: finally the webEDSS goes live

http://multiple-sclerosis-research.blogspot.com/2015/12/clinicspeak-finally-webedss-goes-live.html

 

Multiple Sclerosis Research: ClinicSpeak: what is the EDSS?

http://multiple-sclerosis-research.blogspot.com/2013/08/clinic-speak-what-is-edss.html

 

I haven’t tried the online tool yet, but my neuro (an MS researcher) said my EDSS was 6, which I guess was based on my needing a stick (which I only use when out and about) and that I can’t walk more than 100m without “resting” (mostly due to pain).

 

From EDSS 6 upwards, it’s based purely on walking ability and whether you need an aid or not to walk. As the Prof says: “ EDSS steps 1.0 to 4.5 refer to MSer who are able to walk without an aid and is based on measures of impairment using 7 functional systems (FS).”

 

He also says: “Although an EDSS of 0 (zero) is 'normal' you can still have neurological impairments detected using more sensitive tests, for example cognitive impairments.”

 

If you put “ EDSS” into the small search box on the left, you’ll find numerous articles on EDSS, eg: http://multiple-sclerosis-research.blogspot.com/search?q=edss

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Marina

(belated DX in June '05, SPMS)

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Nick

During a two year drug trail period, specifically looking at 'mobility' I was regually assesed for EDSS. During this time I had to have independent values across 3 neurologists for the EDSS . Generally speaking the value at a given time was vary similarly agreed. However I would point out that over time the value changed, both up and down, with a slow deterioration over the two year period. When first diagnosed ten years ago I was 4.5, today the value changes between 6 and 6.5. I can't see how you could integrate this method of assessment into anything like the current DWP PIP methods. Those are completely unscientific, unlike EDSS.

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Just another Warrior...........

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