What does it mean when you are diagnosed with relapsing remitting MS?
What is relapsing remitting MS?
About 85% of people are diagnosed with relapsing remitting MS (often abbreviated to RRMS). It is more common in women than men and is usually diagnosed when someone is in their 20s or 30s.
The symptoms of MS vary from day to day for most people. On top of this, some people will experience a relapse which is the sudden appearance of a new symptom or the reappearance of old symptoms that lasts more than 24 hours. In between relapses are times of remission when symptoms have improved or may have gone away completely. The name relapsing remitting MS reflects the pattern of MS which alternates between having relapses and being in remission.
What are the symptoms?
There is a wide range of possible symptoms but most people only experience a small number around the time of diagnosis and don't go on to experience them all. They vary from one person to another and from day to day. This makes MS rather unpredictable which can take some getting used to.
Some of the most common symptoms in relapsing remitting MS around the time of diagnosis are problems with eyesight, slowed thinking (cognitive symptoms) and unusual feelings in the skin (such as pins and needles or numbness). 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, problems with eyesight, fatigue or cognitive symptoms can have a big impact on the person who is experiencing them but they may be invisible to others.
Is there disability in relapsing remitting MS?
People who are diagnosed with relapsing remitting MS may worry about becoming disabled. Disability means different things to different people. 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. For example, you may be more severely affected during a relapse than you are the rest of the time. In reality, three quarters of people with MS never use a wheelchair full time.
Although using the word 'disability' may feel uncomfortable or 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.
What treatments are there?
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.
A large part of living with relapsing remitting MS is about managing symptoms and you will learn what works best for you. You will become an expert on your own MS with the support of your health professionals.
Disease modifying treatments
Disease modifying treatments, often called DMTs or DMDs for short, are a group of drugs that can decrease how many relapses you have and how severe they are. Like taking many drugs, they have benefits as well as possible risks, like side effects. They are not suitable for everyone who is newly diagnosed so you should talk to your MS nurse or neurologist about whether they would be right for you.
Find out more:
What is a relapse?
A relapse is the sudden appearance of a new symptom or the reappearance of old symptoms in the absence of any infection. A relapse is sometimes called an attack, episode or exacerbation.
To count as a relapse, symptoms must last more than 24 hours but, more often, they will last for weeks or possibly months. To be considered a new relapse, at least 30 days must have passed since the start of the previous relapse. Symptoms often begin quite suddenly but usually improve with time.
Relapses are caused by the immune system attacking the myelin covering of nerves. This disrupts the messages passing along the nerves and gives rise to the symptoms. Which symptoms are experienced, depends on which part of the brain or spinal cord is affected.
Some relapses have more impact than others. It can be worrying when you experience a relapse but try not to panic.
When do relapses occur?
It is not possible to predict when relapses will happen or how often. Every person's MS is different and so is every relapse. Some people experience several in a year but others will go for many years between relapses.
As the number and timing of relapses is beyond your control, the best strategy is to manage them well when they happen.
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Pregnancy and relapses
A woman with MS is less likely to have a relapse during pregnancy, although the risk of relapse increases during the six months after the birth. This is probably due to changes in hormone levels during and after pregnancy. In the long-term, pregnancy does not affect how someone's MS develops.
Most medications are not recommended during pregnancy so if you are planning to become pregnant, or think you might be already, you should discuss this with your MS nurse or doctor.
Am I having a relapse?
When you are first diagnosed it can be difficult to tell if you are having a relapse or if you are having a bad patch of symptoms which is part of the everyday up and down pattern of MS.
These are a few things you can look out for which may explain why your symptoms are worse and reassure you that you are not having a relapse:
- Do you have an infection like a cold, flu or a bladder infection? If so, this can cause a flare up of symptoms. Symptoms will improve as you recover from the infection so you need to look after yourself in the usual way for a cold or flu, or visit your GP or MS nurse to see if you need antibiotics for a bladder infection. If your symptoms persist, then it is likely that you are having a relapse.
- Are you too hot? Hot weather makes many people's symptoms worse and the same can happen if the heating is too high. Do what you can to get cool and symptoms should improve.
- Are you too cold? Some people find that being too cold makes their symptoms flare up although this is not as common as being too hot.
- Are you feeling stressed? Stress can make any symptoms harder to live with so try to reduce your stress as much as possible.
If you are not sure, you could wait a day or two to see if symptoms improve. However, if you experience sudden difficulties with eyesight or your mobility, then it probably is a relapse. It can be worrying when symptoms flare up but, if in doubt, contact your MS service for advice. With time, you will become an expert on your own MS and will develop a better feel for whether you are having a relapse or not.
Find out more:
- Making the most of appointments
- Living well with MS
- MS and your feelings
- Staying cool with MS
- NHS Choices information about coping with colds and flu
What should I do if I am having a relapse?
Some MS nurses will be able to discuss your concerns by phone or email. Some MS services have relapse clinics that you can attend at fairly short notice. Every MS service is different so you should ask your MS nurse in advance about what to do if you think you may be having a relapse.
Find out more:
Relapses are not always treated. Sometimes steroids like methylprednisolone, commonly abbreviated to methylpred or called by its brand name Medrone, will be given. This is more likely if the new symptoms are affecting your day to day abilities like using your hands or walking.
Steroids are given at a high dose, either as a pill or through a drip, but only for a few days. This calms the immune system and can speed up recovery. However, the amount that you recover will be the same with or without steroid treatment.
Steroids can have significant side effects, like weight gain and thinning of the bones, if given too often. Consequently, treatment is usually limited to a maximum of three times a year and some neurologists prefer not to treat with steroids at all.
Recovering from a relapse
Recovering from a relapse is mostly about waiting to see what happens. Your symptoms may improve rapidly or slowly. Often there is still improvement, although more slowly, three to six months after the relapse. Some symptoms may linger in the longer term or you may find that they go away completely.
Be kind to yourself and keep within your limits while you are recovering so you don't get too tired or fed up. Consider asking for some help from family and friends while you are recovering – perhaps, help with the shopping, washing up or collecting the children from school could make all the difference.
Find out more:
Diaries and reviews
Some people find it helpful to keep a simple symptom diary which lists 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 any relapses plus the dates and outcomes 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.
Find out more:
Living with relapsing remitting MS
Living with relapsing remitting MS means living with uncertainty.
Symptoms can be up and down and you may be concerned about how well you will be on a particular day. You may be worried that a relapse is just around the corner or may happen when you are doing something important.
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 or relapses as, and when, they happen.
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 may imagine that your MS will get worse very rapidly but this is rarely the case. Some people find that their relapsing remitting MS stays the same for decades. Many people who are initially diagnosed with relapsing remitting MS find that, over time, their MS changes so that there are fewer or no relapses but symptoms are having more effect on everyday life. This is called secondary progressive MS.
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 can 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 relapsing remitting 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.
Find out more:
- What happens after MS diagnosis?
- Living well with MS
- Sources of information and support
- Secondary progressive MS (book)
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.
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