Hello, I was wondering how many of use that were diagnosed with RRMS progressed to SPMS (or others) and if so when? I have RRMS, was diagnosed over a year ago now and still have a good quality of life, literature that i have read states that RRMS usually progresses to SPMS in 10-20 years. Is this accurate? Thanks x
Approx 18 years for my progression to SP.
Best wishes
Jan x
Hello
Progression is something that weighs heavily on many people’s minds when they have RRMS.
Not everyone with RR will develop SPMS. Have a look at https://www.mstrust.org.uk/a-z/secondary-progressive-ms It gives a rough guide to SP, but there is also a link to a more detailed booklet. In this, it’s estimated that in the past about 50% of people with RR will progress to SP within about 20 years. Obviously, some people are diagnosed as SP much quicker, sometimes because they had undiagnosed relapses before eventual diagnosis. The MS Trust booklet also says they don’t know what effect the larger array of DMDs will make to the change to progressive disease.
I remember after about 10 years with RR worrying that my MS had become progressive. It hadn’t. Eventually (at about the same time as I ran out of possible DMDs due to adverse side effects) I was diagnosed SP. it had taken about 18 or so years. Although, a couple of years ago, I had 2 clear relapses with complete remission. My diagnosis was then changed to Progressive Relapsing MS. This then meant I could be prescribed Copaxone. Unfortunately this also gave me side effects so after a couple of months I stopped it.
Try not to worry about progression. It’s less likely than it was previously and may either never happen to you, or take so many years that worrying is just one more thing to get stressed about. It’s bad enough having any form of MS. Even if your MS does change to SP, it doesn’t mean you will be more disabled.
Just like everything related to MS, it’s an individual thing, affects everyone differently. Part of what makes MS such a fun (!) disease!
Sue
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Hi asking about future progression is a bit like asking how long is a piece of string?
It all varies so much and may never worsen at all. Folk with every type of MS report a massive variety in the way their own journey went.
Try to enjoy today and not worry too much about tomorrow sweet.
Boudsx.
Thanks for repyling folks. I just dread to think whats around the corner, i will try not to let that get to me.x
Hi Rosie -Bluebell,
Live for today and just keep doing what you like and enjoy. MS is a strange very unpredictable creature. let’s hope it behaves and doesn’t rear its ugly head for years and years.
Jen
Hi, I went straight in at spms, so don’t know, but I will say like the others, don’t worry about it, just live for now, enjoy and make memories,
Jean x