Relapsing Remitting / Secondary Progressive / Primary Progressive / Advanced / Benign ???
I think we’ve all become very hung up on the labels we give ourselves, or are given by other people. I was diagnosed with MS. Not relapsing remitting MS, just MS.
It became clear immediately that I was on an RR course and so I started on the DMD treadmill. And for me it has been a real treadmill, going on and off drugs as they either stopped working, or gave me severe side effects. First on Avonex, then off it because of very scary severe cognitive problems, on Copaxone which worked pretty well for a few years, then off it when it stopped working. Then a wait while prescribing centres were set up for the newer drugs. Then on Tysabri, then off it because of hepatitis, then on Tecfidera, then off it (this time because of a drop in Lymphocytes).
So this time I’ve been off a DMD for 2 years. And in fact over the nearly 21 years that I’ve had MS, I’ve only spent 5 years on a DMD. And my neurologist finally took the bull by the horns and said ‘it’s progressive’. I’d actually assumed that it was progressive for longer than this. But for as long as I could qualify for a DMD it was labelled RR.
And I completely agree with the newer label of ‘Advanced’ MS. And I’d be using that all the time if people only got what it meant.
So guess what? I seem to have started a relapse. Or a scarier thought: perhaps it’s suddenly progressed to a point that I can’t walk even a couple of metres with the help of FES and a walker. Within a few days. So I’m choosing to call it a relapse and to take some steroids and hoping like hell they kick start my system and chase that relapse right away.
But why do we have to have a label for our MS? There are lots of people who are diagnosed with Primary Progressive MS, who were actually having mildish relapses for years before diagnosis, so would it not make more sense to call that Secondary Progressive? And there are many people with RR who are way more disabled than lots of people with a Progressive label. Yet we all seem to think that a diagnosis of Progressive MS is likely to include more disability than the Relapsing variety, regardless of the fact that inflammation causes a hell of a lot of damage (as many of us can confirm). And anyone like me who’s spent most of their 20 or so years of ‘RRMS’ without the benefit of a DMD knows very well than relapses equal nerve damage which equals disability.
Then of course, there’s the ‘Benign’ label. Which has been the subject of some debate off and on over years, including this week. Is a benign course of MS possible? Probably. But is it fair or sensible to start out with that label? I doubt it. Since no one knows what will happen next year, or even next month, it seems reasonable to me to take out an insurance policy of a DMD even if the course of the disease is likely to be benign. And how I wish someone could come up with a less comfortable title for a mild form of MS than ‘benign’.
So what do you all think? Are you happy with the label you’ve been given? Are you terrified that your RRMS is turning into SP? And is that a reasonable fear? Should we actually be welcoming a translation from RR to progressive? It might mean that our disability progression will slow down. And we can stop taking a DMD that for some of us has been like taking one type of poison after another. But then maybe that’s not such a good idea, if I can have a relapse after 2 years without one, during which time my MS has been relabelled SP. I’m sure that’s why my neurologist kept me labelled as RR, just so that I continued to qualify for DMDs. And for most people that would have been a good thing.