I have had MS now for 3 years and count myself lucky to be experiencing no real symptoms. Meds are working and it’s fine. But I have a question. I have read the stats on the effectiveness of DMD’s and it says that they reduce relapses but that it has minimal effect on disability. I’ve also read a post from another person with MS who said that they havent experienced a relapse before but their disability is at 60%. I am confused. I thought it was the relapses that caused the disability and that no relapses = no disability. Cam anyone shed any light on this?
in order to be diagnosed you need to have lesions show on an MRI.
therefore you must have had at least one episode or flare.
any future episodes count as relapses.
maybe the person whose disability is at 60% has something else as well/instead of ms?
as for the DMDs - it’s best to look at these as an insurance policy.
nobody can tell whether or not a DMD makes a difference but i wouldn’t want to risk not taking one.
Hello
Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/disease-modifying-drugs-dmds#do-dmds-reduce-long-term-disability
It’s a bit confusing, but while you’re quite right that a reduction of relapses equals less disability, some people do increase in disability even with their DMDs. The other thing that is probably not affected by DMDs is progression. So it’s not understood exactly why people who are diagnosed with relapsing remitting MS often become progressive (ie secondary progressive or progressive relapsing) after some years, but taking a DMD doesn’t seem necessarily to prevent that happening.
For me, I’m massively disabled and I fully believe that had I been on a good DMD from the very beginning of MS I wouldn’t be as disabled. For a start I wouldn’t necessarily have had the big relapse in 2012 that caused my legs to stop working. I probably would still have accumulated some disability, just nowhere near as much. But by 2012, I’d already had MS for 15 years and had only been on a DMD (Copaxone) for 5 of those years before it appeared to stop working effectively for me.
But I wasn’t able to / couldn’t take the DMDs therefore I am stuck with the disability.
This is the reason I always encourage people to find the right DMD for them, one that balances risks with potential gains.
Sue
Thanks for your replies. I too am on Copaxone and it appears to work. I have never really experienced a relapse. I got diagnosed after I developed l’hermittes sign and that has more or less gone now and I’ve had nothing else. Surely the progression comes about from relapses becoming more and more frequent so I dont understand how it can re reduce relapse but not stop progression. I havent read the link yet so that may enlighten me. Thanks for taking time to respond x