sciencegeek 17/03/18
Last reply 1 month ago
Understanding EDSS score


I recently moved hospital and had a full assessment by a neurologist, resulting in being given my EDSS score for the first time. After reading the MS society website information about the scoring system, I always thought I’d be around 1 or maximum 2… but I got a letter saying I have a score of 3.5-4.

I’m oddly upset about this, even though it obviously doesn’t change how I get on from day-to-day. If there’s anyone else out there with a similar EDSS would you mind posting or messaging me with your symptoms?

I would really consider myself to be completely fine most of the time, with some visual impairment (not fully recovered from ON), bladder urgency, reflexes are different on left side but no weakness or difficulty walking, some sensory issues and a bit of neuropathic pain.


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1 month ago

@sciencegeek , the Expanded Disability Status Scale (EDSS) is also described here :-

It is not so much about MS symptoms, but more about how disabling your MS is.

1 month ago

Thanks. That confirmed what I thought, that it’s a measure of actual disability. It just never occurred to me that my MS was disabling at all, which is why I thought I’d score 1 or 2. I was really surprised by the score being so much higher.

Oh well, it’s just a number and it doesn’t change what I can do.

1 month ago

@sciencegeek it’s just a number and many doctors don’t like the scale. It’s too biased towards walking. At Bart’s they have a campaign called thinkhand which tries to show even if you have high edss that doesn’t mean there isn’t value in treating because hands are super important if your legs don’t work well.

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