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.