The different types of multiple sclerosis

Relapsing remitting multiple sclerosis – abbreviated to RRMS – is the most common type of MS. It’s thought that around 85% of people who are diagnosed with multiple sclerosis are diagnosed with RRMS – around 1.3 million people. So, if this is you, you’re not alone; you’re in a club with many MSers who have a wealth of experience managing their MS’.

With RRMS, you experience a series of MS relapse symptoms – when symptoms appear and take hold for a period of time, which can be days, weeks or sometimes months – followed by periods of remission and recovery (the remitting part) when you otherwise feel stable and relatively normal. Recovery from a relapse may take time, and while your symptoms subside it’s possible that you won’t feel exactly as you did before the relapse.  

How long relapses last will be different for everyone, and so will the severity of symptoms during a relapse. A relapse is sometimes called a ‘flare’ or ‘flare up’, as it’s a period when symptoms flare up.

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After having a relapse, it might take longer for your body to recover and repair. Over time, with continued relapses, you may find that the symptoms worsen and the recovery period is increased – though RRMS affects everyone differently. If you’re eligible, treatment and disease modifying therapies (DMTs) can help to alleviate and manage symptoms.

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RRMS is likely to – though not always – develop into secondary progressive MS, though this can take many years. It’s hard to state how long someone can live with RRMS before it becomes secondary progressive MS – if it does at all – but on average, it’s around 15-20 years. In some cases, it can be shorter or longer than that.

“I was told all those years ago that my RRMS would become SPMS in 10-15 years. It took 23 years so I’m not complaining.” @grandma

Primary progressive MS – PPMS – is less common than RRMS. It’s estimated that it affects around 10 to 15% of people living with multiple sclerosis.

It’s different to relapsing remitting MS, because there aren’t any periods of relapse and recovery. With PPMS, your multiple sclerosis is classed as progressive from the point of diagnosis onwards. That means that symptoms are present from the start of your multiple sclerosis journey, and gradually get worse over time. Research has shown that there may be a subtype of PPMS where there is inflammatory activity, but still more research is needed to understand and determine the pathology of PPMS.

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You will undoubtedly hear the terms ‘flare up’ and ‘relapse’ talked about by healthcare professionals. So what’s the difference? 

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Well, truthfully, it can be difficult to determine the difference between a relapse and a flare up – both for the MSer and the health care professional. It tends to be considered a relapse when there is an onset of new symptoms or an increase of old symptoms that impact upon activities of daily living, over a given time frame. 

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A lot of the literature states that time frame is 24 hours but often, unless they cause a severe disability, most services would leave it a bit longer and adopt a ‘watch and wait’ approach as there can be day to day fluctuations.

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Flare ups are often defined when you’re more aware of your day to day symptoms. For women this can occur at certain times of their menstrual cycle, stress, temperature changes (if they are heat/cold sensitive), overtiring, or as a side effect of medication.

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It’s important to have a timeline of when symptoms appeared, in what sequence, what impact they had and when they went (if they did). This helps when trying to determine if what you’re experiencing is a relapse.

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While the average age of MS diagnosis is between 20-40 years old, PPMS is often diagnosed into the 40-50 year old age bracket. Younger MSers are more typically diagnosed with RRMS.

“There isn’t really a better or worse type of MS to have – even within the different types it varies so much.” @kate

“One perk of PP is we don’t have the unknown of relapses.” @glynjamyn

If you’ve been diagnosed with primary progressive MS, it might feel as if you’ve drawn the short straw (yes, an even shorter straw than the short straw of having MS) compared to RRMS. You live with symptoms pretty much all the time, instead of having long periods symptom-free. 

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Unlike relapsing remitting MS, which can be treated with a range of medication, treatment options are much more limited for PPMS. Ocrelizumab, or Ocrevus, is one DMT that is available for those who are eligible and can be used to help manage primary progressive MS. There are a series of other DMTs in stages of development, so in the future you can expect more options.

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Although PPMS might be considered as the ‘worse’ type of MS to have, it’s not always the case. Symptoms can be mild and remain that way for years with little change, and those living with PPMS don’t experience the sudden relapses that come with RRMS.

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“Some people with progressive MS get worse very gradually over decades – so slowly you can hardly notice it.” @kate

“SPMS is not the end of the world. For me, not having to worry about relapses is a good thing, less to worry about. Symptoms slowly getting worse is much easier to deal with.” @huggybear

Secondary progressive MS – SPMS – is typically the next phase following relapsing remitting MS. Someone can have RRMS symptoms for years, decades often, before it becomes SPMS. A smaller number of people will be diagnosed with SPMS from the beginning, but this is much less common and often only because RRMS symptoms were initially missed or so subtle it wasn’t diagnosed.

Relapses may even cease completely, or happen much less often, with secondary progressive multiple sclerosis and symptoms may gradually become permanent. However, just like PPMS, it can take a long time for these changes to take place.

“SPMS is just a label - symptoms can be managed with the right support and a positive mental attitude.” @Jackie63

Symptom management can help alleviate the impact of SPMS. DMTs are available to help treat those who might be eligible, so medication for MS of this type is an option.

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What type of MS are you living with? Share your experience of life with multiple sclerosis with other MSers at Shift.ms. It’s free to sign up and post in our friendly forums.

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