Primary progressive MS can be extremely challenging, but there are positive steps that you can take to make life more manageable.
This type of MS is called primary progressive multiple sclerosis because it is progressive from the first (primary) symptom, as opposed to experiencing relapses.
Approximately 10-15% of people with multiple sclerosis have primary progressive MS (PPMS). This type of MS commonly affects middle-aged men, although it can affect women and other age groups too.
Although the symptoms get gradually worse, there can be no obvious changes for long periods of time. During these times, the symptoms seem to be stable.
Equal numbers of men and women have PPMS, whereas more women than men are diagnosed with relapsing remitting MS (RRMS).
If you are diagnosed with PPMS you can experience many of the same symptoms as those with RRMS.
PPMS is often diagnosed in people in their 40s or 50s, but it can be diagnosed earlier or later than this.
There can be considerable variation regarding the progression of symptoms with PPMS. For example, one study found that a quarter of people with PPMS needed a cane by 7.3 years after receiving a diagnosis; in contrast, a quarter still didn’t need one at 25 years.
Symptoms differ between person to person with PPMS. PPMS is unpredictable because it depends where damage occurs.
It is currently felt that PPMS is largely due to degeneration of the nerve fibres, rather than inflammation, as seen in RRMS, although there is considerable cross over between the two forms. Some neurologists now consider all forms of MS to be on a spectrum, like other conditions like asthma or autism.
Although this type of MS is progressive, treatment can really make a difference to PPMS. People with PPMS can have long periods of time when the symptoms don’t worsen.
If you’re living with PPMS, you can combine your medical care with ‘self-management’ — improving your quality of life with a healthy lifestyle.
✔MS medication — drug trials continue to see if they can slow down the progression of PPMS. For example, Ocrelizumab (Ocrevus) has been shown to do this for some people with early PPMS, and is now becoming available in many countries for pwPPMS.
✔ Diet
✔ Exercise to ease fatigue, balance, stiffness and other symptoms
✔ Support — staying connected will improve your wellbeing
The Overcoming MS 7-Step program offers a combination of these lifestyle changes. When the symptoms change, different professionals will be able to help you, for example an occupational therapist or physiotherapist.
Although living with PPMS is challenging, it helps to remain positive by talking to others with PPMS. There are also many positive stories of people managing symptoms very well through diet, including some of our own Overcoming MS ambassadors such as Sue Collis and Andrew Lorrain-Smith.