Hi all,

I was dx’ed nearly 2 years ago now with RES RRMS. But despite treatment with Tysabri, I just feel rotten nearly all the time. It’s not the same as the relapses I had during the first year - nothing quite that acute. It’s far more subtle than that, with symptoms generally appearing whenever I attempt to exert myself e.g. I was in town the other week and decided to go for a wonder around the shops (I walk unaided at present). I managed less than an hour before I had to sit down or fall down - they’d just become so weak, and I have no idea how I got myself home. But things like this with the legs and the fatigue especially are becoming really very common, like more days than not. So I’m beginning to wonder with this ‘slowly slowly’ (or not so slowly it seems) progression if I’m SPMS already rather than RRMS. There doesn’t seem to be any clear ‘relapses’, and definatly no remission periods. I don’t see my MS neuro consultant as I have an Epilepsy neuro consultant too and the MS one figured that I should just see one of them (money saving as usual) so there’s no point in me waiting to mention it to him. So I was just wondering what you all thought re the difference between RRMS vs SPMS. I mean how can you tell?


Forest x

Hi Forest,

Feeling rough between relapses is definitely NOT proof positive that you are no longer RRMS.

Some people recover completely - especially from early relapses.

But most relapses do leave some damage, so even recovery does not always mean: “As good as before”.

I felt generally below par for some time (years!) before I realised I even had MS. With hindsight, I’m sure I’d had several relapses, which I’d either ignored altogether, or managed to find some (to me) completely innocent explanation: “I must have caught a bug”, or: “I must have hurt myself somehow, doing XYX.”

BUT, the point is, I didn’t feel well, even outside of those episodes, though it would have been hard to explain exactly why. Fatigue was definitely a factor (actually misdiagnosed as depression - which I accepted). I had a lot of random aches and pains for my age, for which I used to get through a lot of painkillers, but no single thing, by itself, that led me to suspect I might be ill.

It’s often overlooked that even RRMS is a progressive disease - as contradictory as that may sound.

There’s growing evidence damage doesn’t occur exclusively during relapses, which used to be the common assumption.

I haven’t relapsed for ages, but can’t remember feeling well for ages, either. I’ve actually forgotten what it was like to be pain-free, or not to feel worn-out all the time.

Last visit, my neuro made the rather cryptic comment: “If it was going to turn SPMS, it would have done so by now”. Implying not only that he doesn’t think it has, but doesn’t think it’s going to. I should have quizzed him more, but didn’t.

But “feeling generally shitty” is not, by itself indicative of having moved to SPMS.

I’m sure you could ask to see your neuro consultant, if you felt it would benefit you, or you have questions the epilepsy guy can’t answer. Having another condition shouldn’t mean you have to choose which specialist you’re going to deal with. If you don’t mind, then fine, but if you want to see an MS specialist, you have the same rights to care as everyone else.

Don’t get your hopes up, though: for some of my consultations I’ve been in and out so quickly (less than two minutes) that it certainly wasn’t worth the bus fare, or my time to get there. The receptionist even thought something bad must have happened, because I was out so quickly! I just said: “No, neither of us had anything we needed to raise, so that was it!” In those circumstances, I’d be perfectly happy sticking with your arrangement, because it’s not worth going to hospital twice as many times for a lot of two-minute visits.



hi forest

from what i know the only difference is that with rrms you may be offered a dmd.

it won’t make any difference to how you feel.

symptom management is key.

also don’t forget to treat yourself to a good film or something to make the days pass.

carole x

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Hello Comet,the thing to remember is that you have your very own version of MS and the medics need to give it a name so they can get your PCT to buy drugs.Walking around for an hour may be a ‘good’ thing, but is it? 'Praps you should take more breaks,and think about a walking aid,or one day a mobility scooter.You’ll have more energy when you get home so can do star jumps, or whatever to keep using your legs.

As for the MS CONsultant I think you should remind him that MS and Epilepsy are spelled differently for a reason.If he,or the secretary that guards the Ivory Tower get stroppy about you getting appointments get your GP to do something,or mention the hospital administration and if all else fails,NICE.


im spms,bur a freiend who is rr,he takes avonex and metho,his side affects are terrible,rather do without the drugs,

My neuro (who is working on how to slow down progression in MS) said that the labels ‘SPMS’ and ‘RRMS’ are not very helpful. As we have discussed on here before, there is no line which you cross over and you suddenly become SPMS. As Anitra says, most people are progressing even when they are having relapses and remissions. Also, DMDs can reduce the number of relapses a lot - removing the demonstration that people on them are still RRMS.

Thank you all very much for your comments. Tina, what you’ve said has been particularly helpful. I suspected RRMS was progressive as well and that damage would be taking place all the time. not just during relapses. But you confirmed that that’s how the current research now sees things also which I didn’t know. It seems to me that there is a very blurred line, if there is a line at all, between the types of MS, and that all the DMDs are doing is holding back any acute attacks if possible as opposed to the slower chronic progression which continually goes on in the background. So really, the scientific community should be focussing their attention on this, rather than on stemming the flow of relapses which they can do quite well now anyhow.