What does it mean when you are diagnosed with primary progressive MS?
There are three main types of MS: relapsing remitting MS, primary progressive MS and secondary progressive MS. This information is an introduction to primary progressive MS for people who are newly diagnosed.
What is primary progressive MS?
About one in eight people are diagnosed with primary progressive MS (often abbreviated to PPMS).
In this type of MS it is very rare to have any relapses and disability increases from the beginning. This is why it is called 'primary' – because it happens first, rather than having a relapsing remitting phase which can be followed by a progressive phase called secondary progressive MS. 'Progressive' is the word used to describe the change towards more disability in MS.
Who gets primary progressive MS?
Generally primary progressive MS is diagnosed when someone is in their 40s or 50s.
Relapsing remitting MS is usually diagnosed under the age of 40. People with relapsing remitting MS typically move into the secondary progressive phase about the same time as others are diagnosed with primary progressive MS.
About equal numbers of men and women are diagnosed with primary progressive MS whereas relapsing remitting MS is more common in women.
Find out more:
- Primary progressive MS (book)
What are the symptoms?
In more than eight out of ten people with primary progressive MS, the first symptom experienced is stiffness and/or weakness in both legs.
It gradually gets worse and results in minor problems, such as tripping on kerbs or when going up steps, but can then change to more obvious walking difficulties.
Bladder problems or bowel problems are quite common in primary progressive MS. These can be linked to sexual difficulties in both men and women such as maintaining an erection, decreased sex drive or finding there is less genital sensation.
Fatigue is very common. This is not normal tiredness but an exhaustion which is out of all proportion to the task that has been undertaken. Fatigue can be mental or physical tiredness.
Not all symptoms are obvious to other people. For example, bladder symptoms, and worries about getting to the toilet, can have a big impact on the person who is experiencing them but they may be invisible to others.
There are other symptoms which people with primary progressive MS may experience. As with all types of MS, the symptoms vary a lot from one person to another and not everyone will have all of them. Symptoms may also vary from day to day. This makes MS rather unpredictable and can take some getting used to.
What treatments are there?
Some people have the impression that there are no treatments for people with primary progressive MS. This is not true.
The confusion may arise because the disease modifying treatments are not available to people with primary progressive MS. These treatments can decrease the number and impact of relapses and, because people with primary progressive MS do not usually have relapses, these treatments are not appropriate.
There is a wide range of treatments for individual symptoms which you can discuss with your health professionals. The treatment options include:
- drug treatments
- therapies, such as physiotherapy or cognitive behavioural therapy
- management techniques, for example pacing yourself to minimise fatigue
- rehabilitation which involves helping someone to achieve their personal goals
If your symptoms are changing, you can ask for a review if you haven't got an appointment lined up fairly soon. At the moment, there are no treatments to slow progression although this is an active area of research.
Is there disability in primary progressive MS?
What is disability?
People who are diagnosed with primary progressive MS may worry about becoming disabled. Disability means different things to different people. What one person considers disabling may not count as disability to someone else. Much of disability is not about the person but the environment in which we all live. For example, if a shop has steps, then it will not be accessible to all. If products in the supermarket have labels with tiny writing, then not everyone will be able to read them.
There are various definitions of disability. A dictionary would typically say that disability is any result of having a condition that limits what you can do. For example, if you have a bit of numbness in your fingertips, it could make it hard to put in your earrings. Some people might class this as disability but many wouldn't.
The Equality Act covers people with MS from the point of diagnosis even though they may not see themselves as disabled at all.
The public's idea of disability can be different again. People often look for outward symbols of disability like walking sticks or wheelchairs. This is not surprising, given that the symbol of a wheelchair is often used to represent disability.
Find out more:
Will I become disabled?
You will have your own way of thinking about disability and it will be up to you how you define yourself. MS may affect what you can do but only you can decide if this is disabling. As the symptoms of MS vary so much, you may have different views of yourself at different times.
It can be worrying to be told that disability is likely to increase from the beginning of your MS. However, this is not always a fast or a continuous increase as there can be times of improvement and times when symptoms remain the same. As with all types of MS, symptoms tend to be up and down from day to day and each person's MS is different so no one can say how much your MS might, or might not, affect you.
You will have support from your MS team and many symptoms can be improved by trying different treatments. For some activities in daily life, it can be a question of doing the same thing but in a slightly different way. For example, to help manage fatigue, you might find it helpful to sit on a stool or chair to do the ironing or prepare food.
Although the word 'disability' may be uncomfortable or feel inappropriate, it can help you access support. It may be particularly helpful at work or when considering whether any government assistance or financial benefits apply to you. There is no countrywide scheme to register as disabled so each benefit has its own definition of disability.
At work, the Equality Act covers everyone with MS and requires employers to make reasonable adjustments so that you are not at a disadvantage because of any difficulty caused by your MS. Examples of reasonable adjustments may include allowing you to return to work by gradually increasing your hours or, if heat makes your symptoms worse, allowing you to sit in a cooler part of the office. You may not need any adjustments or protection but it can be good to know where the law stands.
Similarly, you may find that you are eligible for some government benefits especially if you have difficulties with walking or the activities of daily life. Possible benefits include Personal Independence Payments and the council-run Blue Badge scheme which gives access to reserved parking places.
Diaries and reviews
Some people find it helpful to keep a simple symptom diary.
It could list any new or worsening symptoms, when they happened and whether they went away or lingered. You could add in when you started or stopped any medication and whether this improved your symptoms or caused any side effects. You could add the date and outcome of your appointments with health professionals.
A diary can be on paper or it could be on your smartphone, tablet or PC. It may be useful to choose something that's easy to carry with you to your appointment.
It can be good to look back over a year and see if you need to take any action. Would you like to discuss anything in particular with your health professionals at your next review? Some people will need a review of their MS more often than others but it is important that everyone has a review every so often. Once a year would be typical but those with no change in their symptoms may be seen less often. However, if you haven't had a review for a while, you should take the initiative and ask your GP or MS nurse to arrange one, rather than assuming that the system will contact you at some point.
Living with primary progressive MS
Living with primary progressive MS means living with uncertainty.
Symptoms may be up and down and you may be concerned about how well you will be on a particular day.
You may imagine that your MS will get worse very rapidly although often the change is gradual over time. You may be wondering if MS will have an impact on your work, education, family or finances. Generally, the best plan is to live each day as it comes and deal with any symptoms as, and when, they happen.
It will take time to learn about your own MS, how to manage it well and to become your own expert. You may find that a task that is easy one day may be surprisingly difficult on another if your symptoms have kicked in. Try to accept that this is typical of life with MS and that you are not to blame.
It is important to look after your overall health so you can be as well as possible – this includes managing psychological factors, like stress, as well as your physical health. This will help you to do the things you enjoy, as well as the things you have to do.
You might like to take a practical approach and learn about how people with MS can be supported in the workplace or at college. You may not need support but you will know what's possible. You might like to read about treatment options so that you are better prepared to discuss them with your health professionals.
Although MS is a lifelong condition, people with MS can expect to live about as long as everyone else. Those who are more severely affected tend to get more infections than healthier people and this may cause complications and decrease life expectancy. This means that it is important to keep as well as possible and get any infections, like urinary tract (bladder) infections, treated promptly.
Being diagnosed with primary progressive MS sets you on a lifelong journey. There is no map for this journey but you will have choices along the way. You may have to face some challenges but you will have the opportunity to use your inner strengths as well as external support, such as your health professionals, and sources of information about MS.
The bottom line
Nobody knows what life has in store for them. Try not to worry too much about what might happen or assume that MS will have an effect on some particular aspect of your life. This time and energy could be spent in a more positive way on something that is important to you right now.
More about Making Sense of MS
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