Can anybody help? I have been having a whole range of symptoms coming and going for 3 years, was diagnosed RRMS a year ago but from everything I have read it seems more progressive. The consultant says I don’t fit into a clear category. I am still waiting for a remitting phase to happen. Do other people with RRMS notice periods of remittance easily?
i was diagnosed rrms years ago but never went into full remission,my walking was affected badly from the start,and i also felt unwell most of the time from the word go too.
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The neurologists believe that 85% of people with MS have a relapsing-remitting form of the disease, where the person concerned has a relapse and then when it stops, the person is just as they were before the relapse. This is not my experience of the disease - I had lost function long before I was diagnosed with the disease, I have lost function after each relapse and between relapses too. I have met lots of people with MS over the years but I have never met one who had complete remission of their symptoms between relapses. Presumably there must be some of these people out there - but the idea that anything like 85% of people with MS are like this is nonsense. I wonder what proportion of his patients your consultant would think fit into a ‘clear category’?
I was diagnosed 15yrs ago with possible symptoms for up to 8yrs prior to that, albeit quite mild.
I was really quite poorly from the outset and i don’t feel as though i had any real clear cut relapses, although i did seem to improve at one point for a few years but was never symptom free.
I was initially diagnosed RRMS, then progressive relapsing MS, then back to RRMS. it was really very confusing and i don’t think anyone really knew tbh. My consultant said i didn’t fit into a clear category.
A couple of years ago i felt i was struggling more and more and after finally having a repeat MRI last year, i was told it’s now SPMS. Unfortunately because there was a break of 9yrs since the last MRI, they have no idea how long i have been SP.
My consultant said if there is any clear deterioration of any function which does not go back to ‘normal’ then that signifies SPMS. I’m not sure i agree with that as relapses can cause damage to function.
In my case though, i feel as though i was already SP by the time i was diagnosed. Thats my theory anyway.
This MS lark is highly confusing and i don’t think i’ll ever really understand it.
I too feel that by the time i was diagnosed i was in the spms stage, i feel that i had already had the rrms stage without even knowing from the age of 17 as over the years i was having weird unexplained things happening to me that went off after 6 weeks or so.
I’m officially RRMS, although I can’t walk beyond a few steps using FES and a rollator, use a wheelchair most of the time, have problems with bowels, bladder, hands and severe fatigue. If I have a relapse, it’s mostly very small and I have very little recovery. Some of that I think is due to the fact that my muscles are now very weak.
The reason I’m still classed as RR is that there was disease activity on my last MRI, a year ago. I’m due for another one in a few weeks. At that point, it might be a bit clearer.
You should also remember that some of the DMDs are still helpful for people with progressive relapsing MS but are not licensed for anyone who is classed as SPMS. So it might be in your favour to be deemed RR in order to still qualify for DMDs. I suspect that some neurologists have this clearly in mind when we ask about labels.
I feel that the RR to SP route is a bit of a continuum. For some people, it’s very clear cut, and indeed, some are diagnosed as SP from the outset, having gone through the RR phase without having been checked out and diagnosed. But, for many of us it’s a much slower process. It’s quite easy to convince yourself that you’ve passed into the SP group. I’ve done it time and time again, only to then be hit with a relapse that has a tiny bit of remission.
I’d thought I had changed to being progressive 4 years ago when I had my worse relapse to date. I couldn’t move either leg at all so was in hospital being hoisted all the time because I couldn’t move. After IV steroids, I gradually had some remission, I’ll never forget being able to move one toe a little bit and feeling absolutely delighted. I never got anything like complete remission, but it proved to me that I was still RR.
Sue
Hi Sue, this is what really confuses me because my consultant would class you as SPMS, as you have acquired permanent disability.
He also said to me that with SP you can have relapses and that disease activity on an MRI often points to progression of the MS.
Why don’t all consultants sing from the same hymn sheet ?
Frustrating !
Yes. I have had RRMS for 15+ years and my relapses have tended to be pretty clear-cut and have come in successive waves with an obvious shape and trajectory. So it is obvious when the storm has passed and it has become a waiting game to find out how much permanent damage I’ve been left with this time. Unfortunately there has always been some. But everyone’s experience seems to be different.
Alison
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Thanks everyone I find this discussion really useful.
emma
The neuros have painted themselves into a corner on these different classifications.
We can have all the different types at the same time - e.g. right leg getting progressively weaker, whilst left leg is weak at times and then gets better.
Someone with RRMS can have more problems than someone dx’d as ppms.
And are those dx’d as ppms certain that they didn’t have problems from which they recovered before they were dx’d i.e. they were rrms initially but never dx’d
And looking ahead ppms and spms are the same - aren’t they ?
(With apologies - have posted a similar message to this a number of times in the past)
It would be great to have a degree of certainty with MS, but unfortunately that isn’t going to happen. I have had many conversations with my MS specialists around diagnosis between RRMS and SPMS. The Clinicians take a very cautious approach to changing diagnosis from RR to SP and they want to see effects and evidence over time before changing diagnosis. I used to find this really frustrating as I like to have certainty, but I had a really useful chat with my MS Nurse who I was really pressing for this clarity. We talked about RR and SP and it seemed to me that SP was really no more than RR, but without the Remitting. My conclusion was that in many cases the only difference between the two is the labels that they are given and these are no more than words!
I tend to think that the labels, RR, SP, PP and let’s not forget ‘benign’, are pretty much worthless to us as individuals. It’s only useful to neurologists when looking at disease therapies. The big problem of course is that whichever label you’ve been given has no relevance to your level of disability. I agree with my neuro to some extent that I’m still RR as I have had relapses from which I’ve had a bit of remission.
Since I’m not on a DMD at present due to side effects, I’ve basically said if I have clear relapse followed by some meaningful remission, then I’ll see whatever other DMD might be available to me. Other than that, the neurologist is waiting to see what pops up on the MRI. By the end of this year, I suspect I’ll be officially labelled as SP, but it’ll make no actual difference to anything. And I could still get relapses!!!
Sue
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Its so confusing! I was officially diagnosed with MS in 2004 but i started with the symptoms in 1998. I have RRMS but over this past year my level of disability is worsening without getting better. I notice that things just seem to be going downhill, I am constantly tired, I am in pain especially at night despite being pregabalin and nortryptaline, I cannot walk far an use a stick, my balance is rubbish and my hands tremble, I am clumsy and as well as all that my bowels are starting to be affected and my mind is just in some sort of fog! so I am not sure if I have gone on to develop SPMS?
I classed myself as a pretty strong woman and I have been fighting this for so long but I am so sick of it now and I am so fed up of being sick and tired! I have a loving family (3 beautiful children and a wonderful husband) but they can never understand the demon that is destroying me from the inside. I am only 37 an I worry how I will end up?