I think Sue you’ve probably got it about right.
My most recent consultation came back as SPMS WITH RELAPSES, which I’ve only recently moved to.
This is how it was explained to me last week.
There is SPMS & SPMS WITH RELAPSES, the second a little less common but still part of the MS “family”.
I always that SPMS would mean no more relapses but the neuro said it’s still possible.
I was also told that remission does NOT clear away lesions, it only means they are not as inflamed, the scaring is still there, as is the damage already caused, no matter what level of MS one has. Old lesions can flare up, cause issues, but it may not necessary be a relapse with new lesions, just old lesions plying up.
For me the grey area with SPMS or SPMS WITH RELAPSES is which is the worse of the two evils ?
You could say that straight forward SPMS without relapsing is better because without the relapsing theres less chance of developing new lesions, and therefor perhaps less chance of more disability after a relapse.
However, on the other hand, SPMS without relapsing could be classed as a slow decline anyway ?
Another thing to consider is, even at the RR stage it might only take one nasty relapse, even years apart, to put someone in a worst condition than someone with SPMS or even PPMS, and possibly not fully recover from it to the level they were before the relapse !
So one could possibly argue that moving onto SPMS or even SPMS WITH RELAPSES is perhaps better because at the RR stage the disease is possibly more potent in regards to having MORE relapses than either SPMS and even SPMS WITH RELAPSES, and it’s here that most damage could possibly occur after relapsing and causing lesions ?
I do think you have a point about most damage being caused PERHAPS during the RR stage, because this is where the lesions are caused, hence DMD’s only offered at this stage to try and hold back a relapse.
Its such an odd illness to pin point anything directly to or to map out.
I think I mentioned in a previous thread that I saw a councillor at my works who was brought in to see how I was doing who also had MS, she had PPMS, which I ALWAYS thought was the worst type, but honestly this lady would run rings around me as far as mobility goes, she walks her dog for 2 hours everyday, drives, does not use any walking aids, but yet she is PPMS due to other symptoms of her MS.
This illness act so differently on each person, no matter what level of MS you have, and that in itself can be so confusing when trying to self diagnose or get your head around your particular level of MS.