Although it may seem overwhelming, managing the transition from RRMS to SPMS shouldn’t be scary. Our experts are sharing the latest research on the blog.read more
None of us is getting any younger – from the fine lines around our eyes, to the fact that we can’t party quite as hard as we used to, the signs of ageing are all there. But somehow the process is so gradual we barely notice it happening; it’s only when we think back to the past that the changes become clear.
If you have the relapsing–remitting form of MS (RRMS), you’re probably more aware of the passage of time than most; maybe you’re constantly on the look-out for signs. After all, studies show that on average, 50% of people with RRMS transition to the secondary progressive phase (SPMS) after 19 years . For many people with MS, this makes the future seem all the more uncertain – with every new symptom there’s the worry you’re entering the dreaded progressive stage.
Which is understandable, but perhaps we need to change the way we think about SPMS. For starters, entering the progressive phase isn’t so much like stepping off a cliff edge, as a continuation on the MS path. Those random episodes of inflammation you’ve grown used to will gradually become less frequent, then stop altogether, giving way to a slow build up in neurological changes.
The fact that it can be hard to recognise a person who has entered the progressive phase of MS shows just how subtle the process can be. So much so that your doctor will probably struggle to spot the transition at first – it doesn’t help that the relapsing and progressive patterns usually overlap for a while . In fact, it can take a year of no relapses and a build-up in symptoms before SPMS can even be diagnosed; sometimes it can take as many as three years for your doctor to be sure .
The chances are you’ll spot the signs your condition is changing before your doctor does. Maybe you’ll notice it takes you longer to climb the stairs at night, for example, thanks to stiffness in your muscles, or that your balance is a bit off. Bladder and bowel symptoms might persist rather than coming and going. Or perhaps you’ll notice finishing the crossword feels like more of a challenge.
Whatever the case, it’s important that you speak to your doctor if you notice any change in your condition. He or she will take note of your symptoms, looking for any that have persisted for at least six months. Your doctor may also perform a neurological examination – something you’re probably very familiar with by now – to look for signs of any progression since your last visit .
Symptoms of SPMS
While there are no definitive markers for SPMS, comparing MRI scans can give a good indication of where your MS is at. Scans of people with progressive MS tend to show more signs of damage in the areas at the back and base of the brain (the cerebellum and the brainstem), for example, and in the spinal cord. This means symptoms such as impaired co-ordination, mobility problems, bladder and bowel symptoms and tremor can be more pronounced. There may also be signs of damage and tissue loss in the areas of the brain associated with memory and thinking . In fact, these physical and cognitive changes are something everybody goes through – it’s just that the process is slightly accelerated in people with MS.
Keeping things in perspective
It’s important to remember that a diagnosis of SPMS doesn’t actually change much, other than the fact that it’s a good time to review your meds. Rather than preventing inflammation, the focus will shift to easing any symptoms that are bothering you, and helping you to stay as active as possible. Your doctor will be able to refer you to a multidisciplinary team of experts – from MS nurses to physios and occupational therapists – who will be able to advise you every step of the way and offer support where needed.
It’s also worth remembering that everybody’s condition progresses at a different rate, so there’s no way of saying how your symptoms will change. Some people find the absence of relapses a relief, as life becomes more predictable; while others use this time to make positive lifestyle changes, whether that’s finally giving up smoking, switching careers, or moving to that dream home by the sea.
None of us can predict the future, but we can sure as hell make sure we enjoy the present. Wrinkles and all.