How do you know if you've gone from RRMS to SPMS?

Everyday living
1

My walking is just terrible now - need two sticks, very slow, struggle to walk 15 metres. My walking has deteriorated a lot over the last six months and for years it has kept getting worse and never got any better. So from that I would say I have SPMS.

However, for the last five years, I have had horrible bladder control problems, frequency and urgency. Over the last six months, these have pretty much disappeared. I was scheduled to have Botox injections much earlier in the year but I have cancelled the appointment because my bladder is fine now. I thought once you had any form of progressive MS, you would never see any improvement in any of your symptoms. My neuro has implied that he thinks I have SPMS but I havenā€™t questioned him closely.

Has anyone ever found out what the line between RRMS and SPMS is? Is it enough to have one symptom that just gets progressively worse? Or if some get better again, is one still counted as RRMS.

2

Hi Sewingchick.

I had RRMS for around 7 years then I noticed that my relapse symptoms were not disappearing completely when in remission. They improved a little but not completely.

My neuro said that I had progressed to SPMS. He said that I was SPMS with relapses which he said does happen. I then started on Rebif as he said that Rebif and Extavia had been approved for SPMS with relapses. This has definitely helped as although my old relapse symptoms havenā€™t improved. I havenā€™t had any new relapses since starting on the Rebif.

Shazzie xx

3

I noticed my symptoms (very) slowly getting worse (very few relapses). My MS Nurse said that Iā€™d gone from RRMS to SPMS. My Neuro concurred.

4

Iā€™m afraid my only answer is: ā€œIf/when you are told so.ā€

I believe I have been getting steadily but very subtly worse ever since diagnosis, despite a notable absence of relapses (Iā€™m not on DMDs, so we canā€™t congratulate ourselves the latter is thanks to them).

I expected to be told Iā€™m SPMS (especially as my neuro and I both agree I probably had MS for some years before diagnosis, so conversion to SPMS now wouldnā€™t be as rapid as it might look).

However, apparently, Iā€™m still RRMS. The reasoning apparently being that I should be ā€œworse than thisā€, if it was SPMS - Iā€™m getting worse, in my opinion, but not to a really noticeable extent. Also what I found a rather strange comment was made. to the effect that: ā€œIf it was going to turn SPMS, it no doubt would have done so by nowā€ (bearing in mind how long we both think Iā€™ve had it).

The implication being that I could be one of those people for whom it never moves to SPMS (or if it eventually might have, Iā€™ll have died of something else anyway), because my lessening of relapses doesnā€™t seem to necessarily mean Iā€™m SPMS. Iā€™m just a (touch-wood) currently non-relapsing RRMS, whatever that is!

Tina

x

5

Tina, that is a truly profound answer and makes more sense than anything else I have read about the change from RRMS to SPMS. My neuro has implied that my MS is somewhat progressive, by putting me on high dose Simvastatin, which clinical trials have shown to slow down progression. But heā€™s never come out and said that I now have SPMS. In fact, heā€™s kept me on Tysabri because my relapse rate slowed down after I went on it (and my relapse rate has not gone back up again). This implies that he thinks I still have RRMS and as long as he doesnā€™t tell me I have moved on to SPMS, then I havenā€™t. This makes me very happy - thank you.

6

Apologies for having posted a similar post many times!

The classification of RRMS and SPMS is flawed - different parts of us are in different stages of improving or deteriorating at the same time.

My right leg is permanently weak - my left one sometimes weak sometimes not so bad. I have periods when my bladder plays up. other times it behaved itself. Could be said I have RRMS and SPMS

I think the Neuros realise theyā€™ve painted themselves into a corner on this and some like your Neuro, Sewingchick seem to be acknowledging this.

And how does any Neuro know that a certain bit of us isnā€™t going to recover at some point in the future.

This dx of SPMS is psychologically damaging as apart from being potentially flawed it can take away any hope/optimism from us and importantly from our relatives/friends/employers.

7

Hello there,and hopefully the wind hasnā€™t done any naughtiness. The ā€˜jumpā€™ from RRMS to SPMS is a mythical thing created by the neurotics,so they have something to write in your notes and they can get the PCTs to buy different drugs for you.We all have our own version of MS,but there are similarities with every other version.Every version has itā€™s own peculiarities,and you are the worldā€™s leading expert on your MS.

There is no disgrace,and it may be very sensible that you start using a wheelchair or piece of mobility equipment.I say to people that if you are concerned about not using your legs youā€™ll have the extra energy to exercise to your heartā€™s content when you get home,having had a better experience.

Wb

8

Donā€™t worry, Wb, I have been using a wheelchair, when out and about with someone to push, for more than a year. I am not bothered about this, although I am a bit sad that I have had to swap my pushbike-with-a-motor for a mobility scooter.

I am very happy to find that other people think the definition of SPMS is essentially arbitrary - missed your previous posts on that, krakowian (obviously not on here enough).

9

Hi Sewingchick,

Haha - well if I was being profound, I didnā€™t know it at the time, as I felt it was a bit of a ā€œstating-the-obviousā€ reply, but I suppose some profound things are also stating the obvious, and yes, I do believe your neuro would have told you if he believed things had changed (or something would have subtly appeared in his letter to your GP after one of your consultations).

I do find it strange that I can be neither relapsing very much anymore nor (apparently) SPMS.

ā€‹But it has been known for a long time that damage does not occur exclusively during relapses, so the fact I feel Iā€™ve been getting worse despite not obviously relapsing may be how it has always been for me - and for most people.

When I look back over the years (way before I was diagnosed), I can count some distinct episodes (the relapses), but I can also see a pattern of feeling generally less well and more fatigued quite independent of that - which was why Iā€™d NEVER connected the two! Iā€™d always assumed the relapses were viruses or even injuries, and never associated them with increasing general debility at all, which was probably why it took a long time to dawn on me I might be ill, and longer still to find out what that illness was (referral to Rheumatology at least four or five years before diagnosis did nothing but reassure me - falsely - it couldnā€™t be anything serious).

So I suppose what Iā€™m saying is I think itā€™s always been that way for me - getting a little bit worse over the years, even when I couldnā€™t point to any distinct incident (relapse).

Myself, I am not worried about getting an SPMS Dx (whether I do, or whether I donā€™t), because I wonā€™t get DMDs taken away - Iā€™m not on them anyway - and I donā€™t think my MS is bothered what anybody calls it - I think it will do its own sweet thing whatever, and what will be will be. I suppose, if anything, an SPMS diagnosis might reassure me I donā€™t have to worry about relapses anymore, and that I wonā€™t face waking up tomorrow with anything completely not working that was absolutely fine today. But I wouldnā€™t treat even that as a cast iron guarantee.

The longer I go without relapses, the more I allow myself to think that perhaps I donā€™t have them any more. RRMS tends to be front-loaded, in that peak relapse activity tends to be in the early years - the years around diagnosis. I donā€™t want to tempt fate, but think itā€™s at least possible I was so late getting diagnosed that my peak relapse activity might actually have passed by that point - without being recognized (by me, or anyone).

I know that is (potentially) dangerous thinking. Does not having a relapse for a long time mean I can stop worrying a bit, or just that Iā€™m overdue for THE BIG ONE? Or are they like buses? None for ages, and then three come along at once? I do hope not! But I know nothing can be changed by worrying about it. I just have to keep telling myself Iā€™ll deal with it when/if it happens. Itā€™s too depressing to live with a wheelchair parked in the hall just in case.

Tina

xx

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10

you can also have spms WITH relapses, like Shazzie and me have.

J x

11

[quote=mrsJ]

you can also have spms WITH relapses, like Shazzie and me have.

J x

Do you mean parts of you improve whilst other parts are on a downward path?

In that case you have SPMS and RRMS.

12

maybe so, i dont take any notice of labels really.to me MS is MS whatever the labels

2 Likes
13

I got re-Dxed from RRMS to SPMS in the middle of last year.
THe process was interesting, but not very satisfying.

Your walking has deteriorated and you ā€œnowā€ need two sticks.
That says that some time back you only needed one.
One stick equals an EDSS of 1.5, two sticks equals an EDSS of 6.5.
To an observer (Neurologist or MS Nurse) that means that you have got worse.
If your decline has slowed, but stabilised or continued, then you can be considered as SPMS (and people with SPMS are not eligible for the first-line DMDs).

Yes, it is arbitary, but it could save the NHS several thousand a year. It also means that they do not have a lot to offer you (and having said that, the Neuro passed me on to her boss, who started looking at things to improve my quality of life. I se a nurse in 8 weeks, and the Neuro in August. That says that they have not totally written me off - I think.

Geoff

1 Like
14

Hi folks, I am in limbo but might have progressive MS. I definitely have progressive something. I was reading the Barts MS Blog which I find very informative.

The professor there says that progressive MS is age-related The following is a quote -

For progressive MS a a drug that targets anti-ageing mechanisms (e.g. simvastatin could be helpful. Why anti-ageing? Age is the most powerful predictor of the onset of non-relapsing progression in MS. There is evidence that inflammation in the brain and spinal cord cause premature ageing and that what we are seeing clinically is age-related neurodegeneration. If this is the case we will need a whole new approach to progressive MS. TheMS-STAT trial was very informative; it showed a positive impact of simvastatin in non-relapsing SPMS with a signal that was present in year 1 and year 2 of similar magnitude. If Simvastatin was working on MS-related mechanisms I would have anticipated a therapeutic lag, i.e. no or little impact in year 1 and a larger impact in year 2. The fact that no therapeutic lag was observed suggests the statin is working on non-MS mechanisms; i.e. on other disease-related mechanisms for example secondary vascular pathology. If I was running a drug development programme for a Pharma company I would seriously looking at these results and thinking how can we develop a combination pill to tackle non-relapsing progressive MS? I am also seriously considering starting taking the polypill, a cocktail of drugs that includes simvastatin, to prevent vascular disease and implementing all the other lifestyle changes to promote brain health."

I take from this is that if someone has had inflammation in their spinal cord when they are younger they are more likely to have premature aging in the nature of nuerodegeneration. I find this interesting as I had infammation of the spinal cord (lā€™hermittes) in 1990 following radiation treatment. In that exact area I have neuro degenation causing the slow development of foot drop. I kind of resemble PPMS but as I have a negative LP they say they cant diagnose me until more lesions appear in areas that were not radiated.

Moyna xxx

15

Hello everyone,

I think SPMS starts when there is a decline in the quality of more than one function. I started off with bladder problems then these declined to not giving me a problem. Then I got double vision and that went away

In the space of 18 years I had two relapses but the problems never completely cleared up. So from 1979 through to 1997 I reckon I had RRMS. I was diagnosed in 1995.

In autumn 1999 the bladder problems returned, drop foot started, visual problems started up again, and I had to start taking Viagra, by that time I was definitely in SPMS. I was in transition for a couple of years.

As we all know MS is totally different for everyone. Briefly I have given you my history

Medically I think it is different because I have not been offered any drug and there are drug trials for SPMS in the way that there have been drug trials for RRMS

ā€‹Try putting ā€˜Transitioning from RRMS to SPMS (correction)ā€™ into Google

Patrick

16

imo its just another name for same illness

17

But it matters because you are only eligible for disease modifying treatment (DMT) if you have RRMS. So if you think DMT has an effect it matters what the doctors call your disease.

1 Like
18

Hi Seingchick.

I was recently put on Rebif as it has just been licenced for use for SPMS as well as RRMS and it is working well for me.

Apparently, there are two that are now being used to treat SPMS. These are Extavia and Rebif.

There is something on google about it.

Shazzie xx

19

Hi,

If RRMS and SPMS are the same disease why are there so few drugs that slow down progress if you have SPMS but so many if you have RRMS? Both affect the myelin sheath but SPMS actually shredds the myelin sheath, RRMS damages the myelin sheath but allows repair (I think)

As far as I understand SPMS is a logical and inevitable continuation of RRMSā€¦

Extavia and Rebif are licensed for some people with secondary progressive MS, who demonstrate relapses

Patrick

20

Hi Patrick,

I do not think SPMS is inevitable.

Most RRMSers do go on to it after a number of years, but not all.

Of course, if we all lived forever, it might be that everyone would transition to it eventually. In other words, for the minority that donā€™t, it might only be because progress towards it is very slow, and something else gets them first!

But even if the real reason is: ā€œSome die of old age firstā€, itā€™s still not 100% conversion.

Tina