Now you've been diagnosed with MS, what happens next?
This information will outline your choices, like telling people about your diagnosis and obtaining support from health professionals and others.
You and your diagnosis
What are my options?
What happens after diagnosis depends on a number of factors:
- How active your MS is at the moment. Are there any symptoms that are troublesome and could be treated?
- What you'd like to happen. There will probably be choices that you can make.
- What support your MS team can offer and how soon.
- What else is going on in your life.
You may feel emotional
It 's common to experience a range of powerful emotions after being diagnosed with MS. You might feel angry, anxious or tearful. You may feel relieved, especially if you've spent years trying to find out the reason for your symptoms. You may feel shocked, especially if your symptoms started very suddenly and you're diagnosed within days. You may feel like it's unreal or hapening to someone else. You may experience a lack of emotion.
Whatever you feel, it's OK. There's no correct way to react to the news of diagnosis - being diagrosed with MS is a lot to take in.
Does life change after diagnosis?
Life doesn't stop at diagnosis and your work or education, family and social lives will continue. You may be worried that MS is going to make a big difference to your life and alter what choices you have. As everyone's MS is different, it's not possible to predict exactly how you'll be affected and whether this could change your path in life. However, you will naturally need to review your options and make choices just as everyone does from time to time.
Talking about your MS
Should I keep quiet?
It may be tempting to keep things to yourself but being open about your diagnosis, and how you are feeling, can be really helpful to you and those around you. You don't have to tell everyone and you don't have to tell lots of peple straight away. However, there are a few people and organisations you must tell about your diagnosis straight away.
Telling friends and family
You don't have to tell people in any particular order. You might like to begin with whoever you feel closest to or you might choose whoever you think will be most understanding. How you approach telling your friends and family is up to you but remember they may have been wondering what's going on and talking about your MS could be good for all of you.
Apart from those that you must tell, it's entirely up to you who you tell and how much you would like to disclose.
You may need some time to adjust to your diagnosis and learn more about MS for yourself, before you try to explain it to a wider range of people. Not everyone needs to know everything about your MS.
Although you may not consider yourself disabled if MS has no effect, or only a small effect, on what you can do, people with MS are included under the Equality Act from the point of diagnosis should you need it.
If it's not a requirement in your contract, you may want to consider what, when and how much to say to your employer. You may want to tell your manager or close colleagues first, especially if you need time off for appointments or need adjustments made at work to help you manager your MS.
Similarly, if you are in education, you might want to think about the best time to tell your course provider. Most further or higher education establishments have disability co-ordinators so it's worth finding out what happens where you are studying.
Support from health professionals
Who you see, and how often, depends on how active your MS is, what symptoms you are experiencing, what treatments are available and the way that the local MS service works. Also, your own preferences should be taken into account, where possible.
You will probably see some health professionals who specialise in MS, like an MS nurse, and possibly some who specialise in a particular treatment, like physiotherapy. You should see your neurologist for a review periodically and may contact your GP from time to time.
Support comes in many forms including prescribing medication, providing practical advice or aids, or counselling for the emotional consequences of your diagnosis.
Your next appointment
When you were diagnosed, you may have been told who you would see next and when. If not, you could ask your neurologist's secretary, MS nurse or GP if an appointment letter doesn't come through after about a month. You should not be left in limbo, perhaps feeling worried, for too long.
In some areas, people meet their MS nurse straight away. In others you may be given some time to adjust to your diagnosis and to decide what your questions and needs might be. Not all areas have an MS nurse unfortunately.
Whilst you're waiting for your appointment, have a think about and prepare for appointment.
Is it an emergency?
MS symptoms rarely cause an emergency although initially every new symptom may feel like one. Your MS team will understand if you are anxious about your MS and will support you to get used to its unpredictable nature. Let your MS team know if you experience new symptoms or if you think you're having a relapse, so that treatment can be considered.
You could ask your MS nurse and neurologist about the best way to communicat your questions or concerns, especially if they work part time.
Support from friends and family
Your friends and family will naturally want to look after you but this should be done in a way that's acceptable to you. You may need to explain how you feel about your MS and how unpredictable it can be. It's good to have support you also need to feel in control of your life. You might want to give them the Making Sense of MS information sheet Explaining MS to others, to help them understand your MS.
Support from the MS community
Some people are keen to share experiences or ask questions of other people with MS. Others prefer to focus on their existing networks of friends and family. It's a very personal choice. Experiences can be shared face-to-face through support groups or online through social media and blogging. If you'd like to talk about your experience or hear about someone elses experiences of living with MS: the good, the bad and everything in between have a look at 'Your stories' or join our open group for anyone affected by MS to discuss life with the condition.
Good information helps
Getting reliable information is important. You can take your time and gather information at your own pace. You might like to begin with topics that are most important to you and only explore in more depth if you feel you need to or want to. Some topics may never be relevant to you. Learning about MS can help you take control and feel more secure in what may feel like uncertain times.
Our Enquiry Service speaks to many people with MS, and can provide you with information or signpost you to sources of support. Whether you're newly diagnosed or have had MS for a while, you can call them on 0800 032 3839 or email firstname.lastname@example.org.
The MS Trust also has a range of printed resources which are available free. Full details can be found in the resources brochure or by having a look around the website.
Your health professionals may suggest beginning treatment soon after diagnosis. Some treatments will help with your symptoms and others cut down the impact of relapses. You may feel ready to make treatment decisions straight away but, if you need more time, your MS team should support you in this. The earlier you start treatment, generally the more effective it's likely to be but a few months delay is unlikely to be critical unless your MS is very active.
Treating your symptoms
Treatments are available for the symptoms of MS no matter what type of MS you have. If you're experiencing symptoms, you should talk about the options for treatment with your health professionals.
Disease modifying drugs
Disease modifying drugs (DMDs) can reduce the number and impact of relapses and also the MS disease activity seen on MRI scans. They are only appropriate if you have experienced relapses.
Looking after yourself
Support from others is helpful but there is a lot you can do yourself to be as well as possible. You might like to review your lifestyle and consider making changes. This could include adjustments to diet, exercise, smoking and how you deal with stress. [insert links to lifestyle section]
Different people have different challenges. You will probably need some time and space to adjust to your diagnosis.
People who have lived with MS for a while often say that the most important thinbgs are to live each day as it comes, find things to appreciate and avoid comparing your life to others. Some people highlight the good things that have come out of their diagnosis such as choosing a new path in life, meeting different kinds of people and thinking more creatively.
Maintaining a positive outlook and getting good information can make a big difference; so can being flexible and taking a problem solving approach.
The choices are yours. You have th option to take control of the things that are within your power. It can be helpful to accept those things that you can't control. Accepting these possibilities can be a way of moving foward.
Last updated: September 2017
Last reviewed: September 2017
This page will be reviewed within three years