Hello all, I am trying to find out what the difference is between relapsing remitting and secondary progressive MS and how the neurologist comes to the conclusion that that’s what it is.
Thank you you for reading this.
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Generally speaking, secondary progressive means you do not have relapses any more, yet disability continues to accrue, independent of relapses.
However, the transition between the two is more of a continuum than an overnight switch.
The usual or majority course of RRMS is that relapse activity tends to diminish over the years, but unfortunately the march of disability does not.
So at some point when relapses have ceased or become very scarce, but disability still progresses, there is a judgement call that the progression must now be down to the progressive phase of the disease.
It is not inevitable that everyone with RRMS becomes secondary progressive, but most do.
I seem to be in a strange sort of limbo (yes, another one!), where - for past few years, I seem to have had relapseless RRMS.
I feel I am getting very subtly worse in spite of that, but the view seems to be that progression would be more marked, if it had “turned progressive”. So you can still be officially designated RRMS, despite not seeming to have relapses any more. SPMS is a combination of scarcity or complete absence of relapses with measurable progression despite that.
Tina
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hi atomicchoc
i think tina’s description above is accurate and shows why doctors often can’t always correctly diagnose what the state of someone’s ms is.
i was believed to be rrms for the first 4-5 months of my dx although had only had 1 relapse (which precipitated the dx), then as my symptoms got worse, i was considered to have spms (but had not seen my neuro in person for nearly 2 months, so arguably how can he provide an accurate dx?). i had a relapse 4 weeks ago, so technically can’t be in spms stage.
its a tangled old web this game, isn’t it?
sorry if thats not been of help, best wishes fluffyollie xx
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you can still have relapses in the secondary progressive stage, i am secondary progressive and my relapses have got more frequent and more severe,they also last a lot longer now, when i was rrms they only lasted 6 to 8 weeks, they can now last 6 months,and reovery from them is not as good either.
J x
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This rather contradicts what Mrs J said (sorry about that, snowflake disease etc, etc). When I started seeing my neuro, I had a sharp deterioration. He put me on high dose steroids, I improved a lot within a few days of having them and, from this improvement, he decided I was still relapsing-remitting (and therefore eligible for Tysabri).
In other words, if a person shows a lasting improvement in symptoms from having steroids, then that shows they were having a relapse and some neurologists believe this means they have RRMS. However, some neurologists think you can still have relapses once you have SPMS. I think that’s cr*p, myself.
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The difference in Relapsing and Remitting MS - and either Primary Progressive/Secondary Progressive is you do not have ‘Remissions’ - life is one big relapse. For some the progress is fast - others a slow slide. So we are never without the symptoms.
l have had PPMS now for 33yrs. So do have some experience.
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my ms specialist is obviously one that does think you can have relapses with spms, i dont believe it either i think i am still rrms.
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Hi, In RRMS there is inflammation of the nervous system in a relapse which causes the symptoms in a relapse which is why steriods work. Early on in the disease there is little if any damage to the actual nerves which is why people can recover quite well once the inflammation has settled down. If a full recovery has not happened after a relapse then there has been some permanent nerve damage. As the ageing process starts to kick in at around the age of 45 there can be neurodegeneration in the area of the old lesions. These nerves essentially die prematurely as they were damaged but not killed during old relapses. It is this neurodegeneration that happens slowly that causes the slow feeling or progression. This neurodegeneration is not caused by current MS disease activity which is why DMDs do not work. The neurodegeneration is caused by disease activity that happened years ago. This neurodegeneration can happen to people who had in the past severe CNS inflammation for issues such as whiplash.
The doctors believe that today if a person is given DMDs early in their MS this will reduce relapses and therefore make the SPMS phase less severe. It stands to reason that the fewer the lesions then there will fewer areas were there can be neurodegeneration.
They dont know why relapses sort of stop or slow down at the age of 45 although it is not connected to the neurodegeneration.
Many neuros are now thinking that PPMS is when the person has had a benign course of RRMS - ie they have had no symptoms from relapses but they have happened and there has been inflammation. But when they enter the SPMS phase then symptoms come on slowly. This is why SPMS and PPMS seem to hit at the same age.
Moyna xxx
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Hiya
I can only go on the difference in my symptoms now that I have gone on to Secondary Progressive.
I was RRMS for around 8 years having symptoms on and off and on the better days I had no symptoms then when relapsing I had lots of symptoms.
I turned SPMS about 2 years ago and since then I would say there are always symptoms there. I wouldn’t say that I have good days now with no symptoms but I do have better days where the symptoms have not gone completely but are a little more bearable than the bad days.
My neuro said that you can still have relapses when you are SPMS but the symptoms don’t disappear completely but hover around in a lighter way. And that is what I experience.
Hope this makes sense.
Shazzie xx
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My Neuro, when asked recently, said he thought I was “essentially still RRMS”. I’m not so sure. 3 years ago I definitely had a kick*ss relapse that meant I couldn’t feel or move anything below my waist and was hospitalised because of it. On this occasion, IV steroids helped to shorten the relapse, there was some recovery, though nowhere near what you might call remission, and I gradually got some feeling and some movement back. Clearly on this occasion there was active inflammation which subsequently died down leaving quite a lot of nerve damage and degeneration. There have been small blips since then but in general I can’t call them relapses. I’ve never had total remission from 3 years ago; I’m now a 95% wheelchair user (using FES and walker to stagger about the house a very small amount), my bowel & bladder don’t work anything like they should, my hands are lousy so eating’s difficult and writing impossible, fatigue is a constant state, plus my memory and concentration are shot. I suspect that the Neuro professionals want to keep people like me labelled as RR just in case. Although some of us have not exactly relapsed for a good long while, as there are no DMDs for SP, on the off chance we are still relapsing they want us on the DMDs. I don’t necessarily feel there is a clear point at which we move from one thing to another, it seems to me that while I have the potential for relapses and maybe some remission, my MS is now some variant of progressive. In the meantime, I’m in the early days of taking Tecfidera.
Sue
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Atomicchoc - you will have come to the conclusion that there is no definitive answer to your question. Neuros are not in agreement, some of the posters on this site are, to put it mildly! ‘confused.’
SPMS can only be diagnosed retrospectively because no one, not even neuros can predict with 100% accuracy what will happen in the future.
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It seems to me (but I am very prepared to be told I am wrong) that some people on this thread think that all your symptoms need to go away for you to be in remission. Other people think that if you get better than you were at your worst, and you are consistently better, then you are in remission. I’m in the second category.
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Definitely with you on this one. Remission does NOT mean “no symptoms” - at least, not unless you are very lucky.
Most people have some residual symptoms from relapses - especially after the first few.
Having enduring symptoms between relapses is not evidence of being Secondary Progressive - it’s completely par for the course.
Tina
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i was diagnosed rrms 23 yrs ago and my symptoms have been with me pretty much all the time, i have not so bad days, bad days and even worse days,but i havent been able to walk more than a few yards in all these years,and the bone crushing fatigue is with me constantly.they now tell me i am spms who knows,i think i was spms when they diagnosed me, i think i had already had the rr stage from my teens up to my diagnosis, as i was always having a mystery illness for a few weeks, every so often but i always got better.
J
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[quote=Shazzie]
Hiya
I can only go on the difference in my symptoms now that I have gone on to Secondary Progressive.
I was RRMS for around 8 years having symptoms on and off and on the better days I had no symptoms then when relapsing I had lots of symptoms.
I turned SPMS about 2 years ago and since then I would say there are always symptoms there. I wouldn’t say that I have good days now with no symptoms but I do have better days where the symptoms have not gone completely but are a little more bearable than the bad days.
My neuro said that you can still have relapses when you are SPMS but the symptoms don’t disappear completely but hover around in a lighter way. And that is what I experience.
Hope this makes sense.
Shazzie xx
[/quote
Shazzie, that is just how i am
J x
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Hello everyone,
I find it really confusing to determine whether I have R&R or SP MS. My consultant neurologist says that he doesn’t know either, and I (with my failed O level biology!) haven’t a clue either. I do feel though that I must have crept into the world of SP as for one I have had MS for an eon and for another, I never really have relapses anymore - I just flag out towards the end of the afternoon.
I hope that everyone is as well as you can be with the MonSter on tow.
Best wishes,
Moira.
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hiya ac
they are spelled differently?!
sorry but i cant add to the confusion other than that!
take care and deal with hour as it arrives!
ellie
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Hi all
dx 2012 RRMS at age 50.
I wish I’d thought to start this thread as its given me loads of useful info.
no definitive answers but that’s the joy of MS.
It does make me feel positive and hopeful for the future.
thank you everyone who’s contributed
regards
Adam
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The GP l saw when l first started experiencing such strange symptoms. l looked as if l had suffered a stroke. He did fob me off with saying it was caused by migraines [one thing l did not have was a headache] and it was after l had my daughter that they eventually told me. ln fact l think l told him. Apparently, many people have one ‘episode’ of MS - and often never have another - so to tell a patient that they have MS could cause a lot of stress/anxiety which just made matters worse. He really felt that this was the best way to deal with it. Of course, there were no dmd’s then anyway - nothing. But he did arranage for me to go to a super hospital to have my baby - and l was given very special treatment. Private room etc. And l was in hospital for 2weeks.
So all along they knew that l had MS - and were giving me extra care - l did go privately for a MRI/LP as there was no nhs facilities that had a MRI scanner then - well not in this area.
Now - of course - doctors have to tell you whether you want to know or not.
I am definitely with you too. Very few of my relapses over the years have resolved completely, but they have all been distinct relapses.
Alison