The word ‘progressive’ crops up a lot in m.s. - shouldn’t it be ‘regressing?’
If you accept these labels - if we move from RRMS to Secondary Progressive MS our condition worsens - aren’t we in fact regressing not progressing.
Similarly with Primary Progressive - the reality is that we are not in fact making progress but rather regressing.
(I never use the terms - I say I have m.s. and thats it!)
You`re grammatically correct, but the medical terminology is correct.
Reading that back to myself…it sounds bossy and not nice…didnt mean it that way chuck!
Boudsx
I guess its the MS thats “progressing”, but the person is regressing.
To throw a curve ball though.
You might be classed as RRMS and perhaps physically be in better shape than someone who is SPMS , but you then get a sudden nasty relapse that leaves you in a worse condition than someone who is viewed as SPMS, yet because you do still get relapses you are still considered as RRMS, and have not progressed onto SPMS.
The titles of MS are a bit of a grey area.
My sister is RRMS but due to her last bad relapse she is far worse physically than me at SPMS, in fact it could be argued that she is mentally affected more than me as well, because her confidence is completely shattered since she had the relapse.
She just keeps thinking that theres another one (relapse) just around the corner.
jactac, please pass on a virtual hug to your sister. Fear of relapse can be hugely debilitating.
Mick
I agree.
The labels are confusing. One persons RR is likely to be utterly different to the next. Equally, some people are diagnosed with PPMS and their disease progresses slowly (that’s why I think we use the words progressive/progression - it’s the disease that progresses, not the person). Others with PP find they progress super fast. Within a very short time they are properly disabled, use a wheelchair and need considerable help.
The temptation people often have is to decide that their MS is ‘the worst kind’ - by which they tend to mean PP. I think it can indeed be ‘the worst’. But then there’s big brain stem relapses with RR (like your sister) which are the pits.
Equally, many of us who start out RR dread becoming SP, thinking it’s worse. But sometimes it’s really not.
The labels we use are off putting and frightening. Many people tend now to use the term ‘advanced MS’ regardless of the label put on that persons pattern of relapses and progression.
Sue
Thank you Mogace.
Totally agree Sue.
There is a temptation to think RR is the "best " level of MS to have, but in reality there’s no best at all.
One bad relapse that leaves a lesion in the brain stem can be utterly devastating.
I agree. I have been told by different medics 'your PPMS is the worst kind". It depends on how whichever type of MS progresses for you. We all have a different journey with this monster. Sadly. Xx
A few years ago when I disclosed my MS to my company they asked if I wanted to speak with a councillor, I agreed as I couldn’t see any harm in it, anyway, the lady councillor actually had MS herself, so it was actually good to talk to someone who would understand everything.
During our chat she explained that she was PPMS, I was absolutely gobsmacked !!
Her mobility was “normal”, balance “normal”, everything about her looked “normal”, but she insisted she was PPMS and during her worst times she could be riddled with pain and bed bound for weeks.
Her PPMS was not effecting her mobility at all !
So I guess every level of MS is totally different from one person to another, no matter what your MS title is ?
I wonder how many people dx’d as ppms have had m.s. episodes in the past - possibly not severe ones. Episodes that were brushed off as happening because they were over-tired or recovering from an illness. Episodes that didn’t merit a visit to the doctor.
Regarding the future for soemone with ppms and someone who is now said to be spms there isn’t any difference - people in neither group are expected to have any sort of remission??