Whoever said ‘a change is as good as a holiday’ obviously didn’t have multiple sclerosis. For anyone living with this unpredictable disease, you probably recognize that any change in symptoms can be a huge source of anxiety. If you have the relapsing–remitting form of MS (RRMS), in particular, then you may worry about your condition shifting into what has long been considered the dreaded “secondary progressive stage” of the disease.
The word “progressive” in itself is pretty scary, conjuring up images of a slippery slope downward, and you in a wheelchair at the bottom of it… but let’s just pump the brakes, and look at the facts.
Understanding the transition from RRMS to SPMS
Firstly, SPMS is not so much a second “stage” of the disease as a continuation of RRMS. You won’t suddenly step off a cliff one day and wake up to discover your MS is suddenly “worse”. The scary terminology is simply a label that doctors use to describe a change in the way the disease behaves. Rather than acute episodes of inflammation, the nerve fibres themselves gradually begin to deteriorate. For the record, studies suggest around half of people make this transition after 19 years , but it varies greatly from person to person.
Recognising onset of SPMS
So how can you tell when your condition has changed? Well, unlike the now-you-see-me-now-you-don’t pattern of MS you’re probably used to, you may notice that certain symptoms stick around and get worse with time. Although this admittedly doesn’t sound great, the change in the way the disease manifests itself is such a gradual one, it’s actually pretty hard to diagnose. In fact, a diagnosis of SPMS can usually only be made retrospectively, after a year, sometimes more, of no relapses .
It’s also worth remembering that SPMS isn’t necessarily a steep slope. Just as RRMS affects each person very differently, progression of MS can vary greatly, too. Yes, some people may notice a deterioration in their symptoms with time – it might take you longer to think of that actor’s name, for example (“You know, whatsername… the one who was in that movie with that other one… you know, with the hair…”). Or maybe, you notice your balance is slightly off (even without the aid of a glass of wine!), or perhaps it takes you longer to stroll to the shops. For some people, however, there are long periods when symptoms are stable, or progression can be so slow they barely notice it .
Finding Support with SPMS
And here’s another misconception: once you’ve developed SPMS you’re on your own – there are no drugs that can halt the progression of the disease; your doctor will simply shrug and shout ‘next!’. In fact, the development of disease-modifying drugs means fewer people are developing SPMS in the first place, and those who do, take longer .
In the meantime, there are a wealth of ways your doctor and physio team can help manage your symptoms, so don’t be afraid to use those resources. Counselling can also be helpful for processing the emotional fallout of living with MS, as can leaning on loved ones and reaching out via online support groups.
Life is unpredictable, whether you have MS or not, but that definitely shouldn’t stop you living it to the fullest. And yes, that includes taking plenty of holidays – real ones!