Primary Progressive (PPMS)
Primary progressive MS affects about 10-15% of people diagnosed with MS.
It has this name because from the first (primary) symptoms it is progressive. Symptoms gradually get worse over time, rather than appearing as sudden attacks (relapses).
In primary progressive MS, early symptoms are often subtle problems with walking, which develop – often slowly – over time.
Whatever symptoms someone experiences, the way they progress can vary – from person to person and over time. So, although in the long-term symptoms might get gradually worse, there can be long periods of time when they seem to be staying level, with no noticeable changes.
This type of MS is usually diagnosed in people in their forties or fifties – older than the average age for relapsing remitting MS – but it can be diagnosed earlier or later than this.
Equal numbers of men and women have primary progressive MS. This is different to relapsing remitting MS, where more women than men have the condition.
People with primary progressive MS can experience many of the same symptoms as those with relapsing remitting MS.
The diagnosis of any form of MS can take a long time. Primary progressive MS is most often diagnosed in people in their forties and fifties, when people are more likely to have other conditions which could cause mobility and walking difficulties. That can also make it harder to reach a diagnosis.
Progressive relapsing MS
Some people who have progressive MS from the start also experience relapses on top of the clear progression. This is sometimes described as progressive relapsing MS.
There are many treatments and ways of managing symptoms which can also help manage secondary progressive MS.
Trials are now testing drugs to see if they can slow down the rate at which people with progressive MS become disabled. One drug called ocrelizumab can do this. It's not yet available but is expected to be some time in 2017.
Research continues in this vital area. See the research section of the site for more information.
Wellbeing and rehabilitation
Healthy eating and appropriate exercise is a kind of ‘self management’ and is useful to many people with primary progressive MS.
When symptoms change, different people might be best placed to help.
- a physiotherapist and occupational therapist can often help to minimise the effects of muscle weakness or unsteadiness on your feet
- a dietician might help you find ways to eat healthily if you are less mobile.
- an occupational therapist can help make adjustments around home or work to make things easier