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.
Link to study: Time between expanded disability status scale (EDSS) scores - PubMed
Thanks in advance.
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
Hope for the best, prepare for the worst?
This is a Welsh study from the days before DMTs looking at the period 1985 to 2005.
It gives a view of the natural progression of MS without treatment. It demonstrates the wide variation in paths.