Hello all you lovely brave people.
I just got told today that my disease is progressing. Does anyone have any advice? I’ve been quite upset this afternoon but it was expected at some point. I was diagnosed with RRMS in 2012.
Sorry to hear about this @Loublou it’s natural to be upset, because even though we know that things can progress with our ms, it’s always a shock to hear news like that. We just have to take one day at a time. Making the most of the good days. And getting through those not so good days. But, mostly those not so good days do pass, for most of us.
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Yeah it is a right kick in the guts, and only thing you can do is carry on as best as possible. Like you I was initially diagnosed with Release Remitting and like you I then get told i am now Secondary Progressive. There is no rule book other than try not to let it stop you.
So sorry to hear this. It’s just not what anyone wants to be told.
I have a few rather little ideas.
First point, apparently the rate of progression varies a lot - some people can flatline for periods. So perhaps we should not be too put out by the “progressive” label in itself. What matters is how you are doing.
Then, are you eligible for treatment? There is at least one DMT specifically for SPMS now, I think - so perhaps worth asking if you’re not already on it. My impression is that, in reality, RRMS and SPMS can overlap a bit anyway.
Even if you’re not eligible for a DMT, there should still be clinical support with any symptoms.
And then, there’s taking part in research trials. Are you signed up to the UK MS Register? There are various clinical trials that specifically recruit people with progressive MS. Octopus, for example, if that’s still recruiting. You might end up in the placebo group. But either way, taking part in a trial means you get plenty of clinical attention.
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If you are happy to share then what was the lead up to the diagnosis of secondary progressive? Also do you know if it’s active or non active SPMS? If so called active I.e you still get relapses or activity that shows up on and MRI then there is a good case for staying on whatever DMT you are on currently.
To be honest, I think there is little or no difference between RRMS and SPMS and from what I know it was a distinction made mainly for the purpose of getting drugs licensed. (During RRMS we all get some gradual increase in symptoms especially after a relapse from which we rarely recover fully). To put it another way, you can accumulate disabilities as fast or as slow with RRMS as with Progressive.
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Hi Loublou,
In my opinion everybody has their own unique experience with MS. It is great to chat here to converse with people who have similar experiences and to hear from those with different experience. My own experience is that in 1991 I had some very severe issues and was diagnosed with RRMS. There were flare ups and some remissions to almost full health. In 2006-7 I started a decline that was gradual and I was grateful to no longer have the ‘attacks’ since about 2010 there seems to be no decline and my condition is pretty much stable.
The labels are useful to a point but it is more important to just make the most of your current situation and learn from any mistakes you make.
Wishing you all the best
Mick
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