Does anyone know what EDSS means, I always see it on the letter the consultant sends to me and my doctor?? At 1st it was 1.5, and then it can go up to 6, back down to 4.5. I always forget to ask when I go back. Thank you

If you google it or search Wikipedia you can find what the individual scores signify. My useless (ex)neurologist graded me wrong - needing two sticks rather than one to walk.

I mean he put me down as more disabled than I was - useless

I take it not many people get to 10 seeing as ms doesn’t kill you?

Most health service professionals will tell you that it is a bit dubious when you get above 7.0.
One of the FES people at Odstock told me that they do not use it, or place much reliance in it, even below 7.0.

Last month I got upgraded from 1.5 to 6.5 because I need two sticks. This is fair enough, because I really do need them.
Of course, 6.5 is the top limit for most DMDs - so just watch out for that one.


For Anonymous… MS can cause death. When people are bedridden from MS they are more prone to secondary complications such as pneumonia and bedsores and these can easily be fatal in a frail, very ill person. The Death Certificate will usually put the cause of death as pneumonia or respiratory distress etc but none the less the MS is what caused the secondary illness so yes, MS can cause death.

Even when someone dies from cancer the cause of death is usually listed as heart failure or repiratory fauilure rather than cancer. By law a death certificate must state the actual cause of death, not the contributing illness leading to the cause, if you see what I mean.

Most people with MS die from other causes unrelated to MS the same as the rest of the population but certainly some people do die as a direct conswquence of having severe end-stage MS.

The EDSS is not really a great measure of MS disability as it is only a measure of mobility and not other factors and as we all know just because you can walk fine does not mean you are fine


Is this a small minority of people who end up completely bed ridden? I’m coming from an undiagnosed position & is this situation not a rarety? Eg worse case scenario? I thought the average ms patient & most cases apart from rare ones don’t see people bed ridden & dying.

Don’t panic… definitely a minority. And yes, worst case scenario. Most people with MS, as I said, die from causes unrelated to their MS just like the rest of the population. Most people with MS don’t end up bed ridden and many don’t need wheel chairs etc. But it is a myth that MS can’t kill you.



It is a real bug bear with me when people say you can’t die from ms. You can but under extreme circumstances, such as getting another illness causing complications. But its such a minority that it doesn’t bare worrying about.


Thank you all for your comments, and Pat thank you, so 6.5 is quite high? Just had 2 days pf steroids (fri+sat) so hopefully kick in soon, woke up this morning feeling very tender, my under arms quite tingly and sore to touch??? Another weirdness of this disease eh lol x