I came across a scientific study of patients with MS and EDSS progression.
Time to each EDSS Score from onset [median in years from study of ~2000 patients]
4.8 years to get to EDSS score of 2
15.1 years to get to EDSS score of 3
28.2 years to get to EDSS score of 4
31.2 years to get to EDSS score of 5
32.4 years to get to EDSS score of 6
Does anyone know if there are any articles that have data for EDSS scores 7, 8, 9 and 10?
Or if anyone tracked their progress through each of the EDSS scores, and whether it tracked quite close this data?
Edited again - I must add that my partner has not had any DMTs (never met criteria under NICE guidelines), so seems to be tracking a little faster than the median years in the study. He officially has SPMS (was diagnosed a few years ago but did start out as RRMS), and I don’t believe he could be prescribed any DMTs now. He was told by his consultant at his last appointment that there was nothing they could do - no medication available for SPMS.
I do wonder how much the DMTs affect the progression, and whether any patients in the study were taking them.
Oh dear, I’m ahead of the pack, I’m afraid. But then my RRMS was very aggressive from the start, and without DMDs I would undoubtedly be far worse. All too depressing for me, and I’m going to not think about it any more, which I think is a good policy for EDSS scores.
When I was diagnosed 16yrs ago I went in straight SPMS, I had my 1st issue in 1990 with iritis and lived with what I will call symptoms that I just got on with life, fatigue and slight balance issues, when I was diagnosed I ws told there was nothing for me, as in DMDs, I only had Baclofen for stiffness and spasm + Gabepentin for nerve pain, now I only have Baclofen, Gabepentin no longer works, so the thing is, if I had been diagnosed around 1990 and given DMDs would I be were I am now…chronic pain, terrible fatigue, mostly in a wheelchair, I do still try and walk indoors on my better day’s, (not many of these) well who knows, how long is a piece of string, my MS nurse told me my EDSS score is now 7/8
EDSS is a well established measure and has been used for many years. However, once beyond around 3 or 4 it really collapses into a mobility assessment. If your MS hits your balance you will “progress” rapidly compared to others. The best explanation I have seen is by Aaron Booster
Hope this helps but it is probably best to just get on with things