Just been speaking with a friend who has recently had a spell in hospital. She had a nasty ms flare up.
When she was discharged she was told that she now has Progressive MS. She’s been SPMS for a number of years and has recently been granted an electric wheelchair.
Neither of us have heard of this and wondered if the healthcare professional had just made a mistake, or is there a point when your progression leaps into being more progressive.
I’ve advised my friend that she should not give up on her exercises, although I realise how difficult it can be but talk like this can easily make one give up don’t you think?
Most people start out with relapsing remitting MS (RRMS), which often becomes secondary progressive (SPMS), although some unlucky people start out with progression immediately and they are known as primary progressive (PPMS).
Having said that, in a lot of cases, people are given a diagnosis of SPMS from the outset, usually because they’ve had symptoms (ie relapses) over years and not realised what they were.
However, many neurologists nowadays dislike the terms RR and SP particularly because it’s possible to have relapses whist also being in a progressive state of MS. And the terms aren’t necessarily that helpful given how our symptoms and disease progression etc differ from one another. So it’s often less than useful to be hung up on particular labels.
As my own neurologist said recently, it doesn’t matter what you call it, MS will do whatever it likes! And it does not obey rules that are rather arbitrary.
sounds like a misunderstanding in terminology on either side!
this one always confused me a little, M/S to the best of my knowledge is a progresive kinda thing, it dont get better anyway! ok meds may help to slow progesion, but bla bla bla, spin ya coin pal! maybe im sinicle!!!
1st benine M/S, 2nd primary progresive ?? 3rd SPM/S secondery progresive ?? then? ya head falls off!! js try & see the nice things in life
correct me if wrong, pls, Choose what name ya give it they are all pretty shit!!
Thank you for all of your answers, I think you are all correct. My friend is inclined to link on to negative phrases; so I was a bit annoyed that she was given this news (she already had the label anyway).
As far as I understand it, the word Progressive is gradually replacing ‘Secondary Progressive’ but means the same.
If you take a look at the Publications list on the website here ( can’t find the link at the mo) you’ll see there’s a booklet called Understanding Progressive MS . It talks about both about PP and SP but mostly the latter. If I remember correctly from a Facebook and Twitter announcement some months ago, it won an award too .
It caused mega panic with me lol ! I’ve been SPMS since 1996 and all of a sudden thought I’d been classed at PPMS until I heard about this. I guess it’s just another ‘label’ which suits a purpose whatever that may be
Hopefully these definitions rrms - ppms - spms will cease to be used because they are flawed.
Bits of us may be in a steady decline whilst other bits of us get weak and then recover.
And from a psychological perspective - is telling someone, family, employer etc. that we have a condition that is ‘secondary progressive’ really helpful?
l have PPMS - 34yrs now. And it is very different from RR. When l read about people worried about another relapse it sounds like a different disease altogether. With PPMS - it is with you ALL the time - no remissions - initial symptoms stay with you and progress. That is primary progressive. SPMS - is when people have symptoms that come and go - as RR - then they stop ‘going’ and stay - this is secondary progressive ms.
l really do not think they are even the same illness. Just all put under the same umbrella name of MS.
I’d be tempted to agree with you spacejacket - except that so many of the same problems are experienced by PPMSers as RR and SP. The difference is, as you say, that you don’t have periods of remission from the symptoms. But the symptoms and the damage remain in the same neural pathways. So all types (and let’s not forget the misnamed ‘benign’ MS here!) experience problems in the same neurological areas, and someone with RR/SP can become just as disabled, quite as fast as someone with PP. That was more true of course in the days before the explosion of available DMDs.
I can imagine though, that a diagnosis of PPMS must feel like the end of the world, whereas a diagnosis of RR does not, and of course, there is treatment available in the form of DMDs for those people diagnosed with RR. So a person diagnosed today with RRMS has every chance of not suffering the same kind of nerve damage that you, as a PPMSer and me as a RR/SPMSer have experienced.
And I truly hope that in the future DMDs will become available and effective for people with progressive MS, preferably before their disability becomes too severe.
Quite agree there Ssssue, in my experience some friends have succumbed with SP the same as or worse than PPs. It is all the same disease, it’s with me all of the time too and I’m quite new to SP.
