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How do they know?

Hello all,

I’m sure someone will know the answer too this one.

Two years ago I had my first consultation with a new neurologist (having not seen one for more than twenty years) the consultation lasted all of fifteen minutes and I had been escorted the sixty feet or so from the waiting room to the consulting room by him. I later received a copy of the letter He sent to my GP which discribed me as 5.5 to 6 on the EDSS scale.

I’m still struggling to accept that I have a disability, I knew I was ill, but I’d not even heard of the EDSS scale before and had to look it up.

But 5.5 to 6! I’m still on both feet (although occasionally fall over my own feet into a bush or onto my derrière) don’t use a stick or crutches and don’t have any mobility aids (although I could easily be beaten in a race by a sloth) I do need something but I’ve not been given any proper help with assessing my needs, the OT dismissed my questions about rollators, my GP ignored my questions about sticks, so I’ve given up on anything like that and have been researching mobility scooters. (And now my heads done in)

So here’s the question, how without seeing a patients’ decline and without any test can a EDSS score be given? I didn’t feel that there was enough to go on for this score to be arrived at, unless he was going purely on his experience as a MS specialist.

I have never been assessed for EDSS either, but it’s simple enough to work out based on what you can, and can’t do.

This guide on the Barts Blog might help.

If you think a stick (or other mobility aid) will help just try one out and see. There can be fair bit of trial and error with this MS lark and often a matter of finding what suits you best.

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The EDSS I think includes issues with bowel and bladder function and pain, such as if standing causes pain in legs for example. Also weakness in legs or/and arms.

Hi Dolly, I expect you will get more replies, but here’s my take on the edds scale.

It does read as very scary…in my case I was over 8 the last time I looked…but as I don’t have MS anymore (was wrongly diagnosed for 8 years with ppms) I’m not sure it still applies to me.

Anyroad, I’ve seen other members here say they don’t pay an awful lot of attention to it.

Go by how you feel and cope, yeh?

Pollxx

Hi again.

Just looked at the edds scale. I think the latter descriptions don’t allow for variations in between point 8-10 and sound extremely alarming!

If you feel strongly about where your neuro placed you, then ask your MS nurse about it.

Polly x

Here are the definitions of the two relevant scores on the edss

5.5: Ambulatory for 100 meters, disability precludes full daily activities
6.0: Intermittent or unilateral constant assistance (cane, crutch or brace) required to walk 100 meters with or without resting

My (useless) neurologist labelled me as being at 6.5 on the edss a few years ago, when I was using one stick. I didn’t know anything about the edss at the time but my physio pointed out that he had wrongly assessed me. Neuros see lots of patients and plenty of neuros are quite slipshod themselves and get this stuff wrong.

So I’d say, (1) don’t worry too much about the label he’s given you; (2) ask your GP if they can refer you to a neuro physio or someone else who will give you advice on a mobility aid that will help you; and (3) make sure you’re getting plenty of vitamin d because this helps with absorbing calcium so your bones won’t break if you fall.

One of the major problems with the EDSS is that it’s all about walking and mobility. Whereas our disabilities are not necessarily linked to either.

Recently my neurologist stated in a letter that I was “at least 6.5 to 7 on the EDSS”. He’s actually right, but he didn’t do any kind of examination (in fact I don’t think he’s ever done one) and he didn’t ask me about walking, he just see me in my wheelchair all the time.

I have done the more comprehensive EDSS on the Barts Blog (see Whammels link above) and I come out as a 7. Which is why my neurologist was actually pretty much right, but I have no idea how he came to that conclusion.

Sue

Don’t complain, they are being kind. On paper you need to be at the disabled end of the edss for the purposes of benefits.

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But the problem is that if the neurologists are essentially guessing, without doing proper examinations, then they are scoring some people too low. And as the EDSS is all about mobility, then some peoples disabilities are being underrated, again scoring them lower than they could do with being scored for the sake of benefit claims.

In addition, many people do not claim benefits and find that it’s rather dispiriting to be allotted an EDSS score that is higher than they feel they should be.

Sue

Hi Florence,

My own 5.5/6 EDSS score, in my opinion doesn’t reflect how long it takes me too walk 100 metres, I can walk a lot further than that but, not without discomfort and at the speed of a sickly snail! It also doesn’t reflect my diabolical coordination.

And as far as benefits are concerned, the assessments benefit claimants undergo often seem to ignore doctors reports for both ESA and PIP, and are based on an assessors report, which is why we’ve been reading horror stories for the last six years!

It beggars belief that medical reports are overruled by incompetent non medical idiots but that’s the Tory’s for you. Their objective is to force everybody off of benefits. The government even send dying people to work so they are just evil.

But say you were trashed by the wca and went to an appeal…you need to be able to show on paper that you are disabled. It would be awful for a person at a wca to not be able to walk but the edss says otherwise. I don’t think it I worth being hung up about unless the edss is the wrong end of the scale. If it scored too low it will cause problems.

I don’t think walking speed comes into the EDSS. A lot of things don’t. I asked my neuro about it and was told that it was useful in drug trials. That it is very coarse. Use of stick, indicating mine, rules to EDSS 6. When I asked my (as then) neuro physio who did do a neuro exam of some form Checking spasticity and weakness, about EDSS she hadn’t heard of it.

ProfG at the Barts blog (see whamel’s post with link to the webedss) in other post’s on that blog has written that it is rare for neuros to the score EDSS properly. That a measuring wheel (distance) should be used, etc. He has written that very obvious 'milestones are often used instead of a proper evaluation. 6 is use of cane, 6.5 two canes, 7 a wheelchair.

EDSS isn’t any good re. benefits. Own points system. That seem to be used badly though my pip claim was okay but for taking for ages.

My EDSS has improved since my knee was replaced. My legs are the same length now. I have been really lucky. I don’t need a stick, but prefer to have one as my balance is a bit dodgy on the left. I am going to write to my orthopedic surgeon to thank him.

He has changed my life. I wonder how many other people could be helped by good orthopedic care?

I thought my knee replacement would be complicated, as the ligaments were too tight to allow movement. The problem disappeared as soon as the knee was in the correct place.

My right leg muscles were wasted. It’s almost the same size as the left one now. Good physio has helped. Time to go to physio now, in fact.

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