The question’s in the title really. How do neuros decide you’ve got PPMS or SPMS rather than RRMS? I mean once you’re at the stage where you get worse but don’t improve much when the ‘relapse’ finishes?
I was diagnosed after a lumber punch and other seemingly silly tests but it wasnt untill I never had relapses did I discover I had PPMS. I dont know of how they discover type. Hope tthis helps. Don
Hi hon, RRMS as you know has relapses and remissions. Sometimes, often after years, the remissions aren’t so pronounced and the person has permanent disability… so then the neuro might say they have SPMS (secondary progressive).
With PPMS there are never any relapses and remissions. Right from the first symptoms there is gradual progression… although symptoms may still fluctuate day to day, but generally there is symptoms on a daily basis.
Here is the link from this site that explains it:
The neuro will monitor the person from when they are first seen. If there are no remissions and continual symptoms they will get a dx of PPMS.
Neither RRMS or SPMS can turn into PPMS. It starts as PPMS and remains as that.
Hope this helps,
Pat x
But several of my friends with PPMS have been better for a while, then worse again - does this mean the original diagnosis was wrong? Do people with PPMS normally never have better spells?
Well you can have better spells yes… but they rarely last for long. A few days if you’re lucky… maybe a few weeks… but in general you are still having symptoms, just not as bad as at other times.
There is another type of MS which is only fairly recently identified, and that Relapsing Progressive MS. So the person has a progressive form of MS… so in other words generally symptoms all the time… but they will also have relapses when their symptoms are much worse.
It’s possible that some people dx with PPMS are actually this relapsing type as it’s not as widely known.
Really though… it’s the neuro that can identify which you have. Sometimes a person had such minor relapses that it was never identified as RRMS… that is why the neuro asks so many questions at the first visit. It’s possible to have had small relapses and by the time thing get worse and you get worried and see a neuro you are SPMS.
Wasn’t that long ago when people just got dx with MS and that was it… no types at all. And some people think that the types vary so much from person to person that they don’t really mean much.
But… and this is an important difference… RRMS and SPMS react to drug treatments much better than PPMS. There really is no drug treatment for PPMS right now (apart from pain-killers). The other two types can be treated by DMD’s.
As per usual, MS is different for each one of us…
Pat x
My neuro speculated that I may have relapsing progressive MS but he was not sure and neither am I. I had a couple of symptoms in 2011 that could have been relapses but nothing before and nothing since in the same vein. Time will tell I guess. Teresa xx
Anne,
I can only tell you what happened to me. I have had problems for many years, lots of tests. Nothing. Four years ago I was diagnosed with RRMS. I used DMD’s but they did not help and I was so ill onn them I was told to stop them. During this time I was not sure if I was having relapses or not. I have got worse over those four years. Last April I was given three infusions of steriods, 18 hours in all, so heavy duty stuff. The prime reason for this was to see if it helped long term. If it did, then I had RRMS. If not, I had PPMS. Sad to say they only helped for about 2 weeks. Diagnosis PPMS.
Please do not read into this that I have turned from RRMS to PPMS. As Pat says, that can never happen. It is just that sometimes it is hard to diagnose which type it is. It takes a long time and you have to see what your history has been.
So here I am with PPMS. It is not a big shock, I had felt this to be the case for sometime. There is nothing that can be done, just got to lead as best a life as I can. And boy am I going to!
Hope this helps.
Annex
Pat, as far as I know there aren’t any DMDs for SPMS - if you know of any please let us know 
xx
Hi Bouncy… I’m sorry… I am definitely wrong. There are DMS’s for RRMS and not SPMS.
Apologies,
Pat x
No worries, Pat - I think there would’ve been a fanfare if something significant had been found for SP. Hope you’re well
xx