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Primary progressive MS diagnosis

Find out everything you need to know about primary progressive MS, what makes it different from other forms of MS and how it is diagnosed.

Being diagnosed with PPMS1 can be an extremely daunting time, that may feel like it presents insurmountable challenges ahead.  At Overcoming MS we have the tools to equip you for that journey, where you will be supported at every step.

These include not only practical information like the life-changing OMS 7-Step Program but real-life stories from people who have been in exactly the same position as you.

What is primary progressive MS?

Primary progressive MS gets its name because it gradually progresses from the symptoms, rather than presenting itself in relapses and periods of remission.  Although the symptoms tend to worsen over time, they can remain stable with no significant changes for long periods.

PPMS is experienced by between 10% and 15% of people who live with multiple sclerosis. It is more commonly  diagnosed in men in their 40s and 50s, although it can affect anyone regardless of their age, and a roughly equal proportion of men and women have PPMS.

It is widely believed that PPMS is linked to degeneration of nerve fibres, while RRMS is more associated with inflammation, at least in its earlier stages.  Secondary progressive MS then tends to characterised by less inflammation and increasing levels of degeneration.

What are the symptoms of primary progressive MS?

The symptoms of PPMS experienced by individuals can differ significantly because it is largely dependent on where damage has occurred in the brain and spinal cord.

Common symptoms of PPMS include:

The speed at which these symptoms progress can vary considerably. For example with difficulty walking, a study found that a quarter of those with PPMS needed a cane within 7.3 years of diagnosis, while another quarter didn’t need one after 25 years.

How is primary progressive MS diagnosed?

Because PPMS is most commonly diagnosed between the ages of 40 and 60, other age-related conditions may present similar symptoms of their own (such as pain, difficulty walking and vision problems), making PPMS particularly difficult to diagnose.

Like any form of MS, PPMS is diagnosed using the McDonald criteria. This aims to make diagnosis as accurate and as swift as possible.  It looks closely at damage to the central nervous system and advocates the use of an MRI scan.

What happens after primary progressive MS diagnosis?

After a diagnosis of PPMS you are likely to experience many feelings – the crucial thing is to give yourself time to process these and assess your treatment options. Your individual symptoms will determine exactly what happens after diagnosis, but there may be certain administrative tasks to be carried out such as informing your employer or notifying a driver licensing authority.

The wide-ranging support of the OMS community is here whenever you feel you need it.  You should speak to your GP if you are struggling to come to terms with a diagnosis as they may be able to refer you to mental health and other support services in your area.

How is primary progressive MS treated?

Despite the progressive nature of PPMS, there are treatments that can make a tangible difference to the condition and to your quality of  life. With the right treatment, you may experience long stretches where PPMS symptoms do not get noticeably worse, or may even improve.  A combination of medical care with a healthy lifestyle is the key to finding the right balance that works for you.

Existing treatments for PPMS include:

Ongoing drug trials are seeking new ways to slow the progression of PPMS.  Ocrelizumab (Ocrevus) is the first licensed drug to treat PPMS, and has been shown to slow disability progression in people with early PPMS, and it is becoming available in more and more countries.