Primary progressive 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. This term is now being replaced by the diagnosis ‘active progressive MS’.
Managing primary progressive MS
There are many ways of managing the symptoms of primary progressive MS.
Trials are also testing drugs to see if they can slow down how fast people with progressive MS see their disability get worse. One drug called ocrelizumab (Ocrevus) can do this for some people with early primary progressive MS.
It can work only if they have relapses or inflammation can be seen on MRI scans of their brain or spinal cord.
This drug became available around the world in 2018 but isn’t available in the UK on the NHS for primary progressive MS. This is because the difference it makes isn’t seen to be worth the money it would cost the Health Service.
The makers of this drug are in discussions with the NHS about how to make it available. Visit our ocrelizumab page for updates.
HSCT might be another option for a small number of people with progressive MS and who still have inflammation.
Research continues in this vital area.
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're less mobile
- an occupational therapist can help make adjustments around home or work to make things easier.