Last reply 5 months ago
Understanding EDSS score

Hi.

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.

Thanks.

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stumbler
8 months ago

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

https://www.mstrust.org.uk/a-z/expanded-disability-status-scale-edss

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


sciencegeek
8 months 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.


californiadreamin
8 months 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.


sfrox
5 months ago

Hi, I tried to figure out how to PM you but here we are. It seems we have nearly the exact same symptoms, and my prEDSS ended up being 3.0 using this tool. https://openmsbioscreen.ucsf.edu/predss/about

I was a little annoyed, but had to be truthful about some things even if they aren’t totally consistent all the time. Bladder and vision seem to have kicked it up there – my main recent relapse was severe ON.

On a side note have you tried CBD for neuropathy? I thought it was amazing. All the best

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