What was your experience of diagnosis?
Making Sense of MS: In this short film a range of people talk about their experience of being diagnosed with multiple sclerosis.
You and your diagnosis
Now you've been diagnosed with MS, what happens next? It all depends on how active your MS is, what treatments are available and what you'd prefer to happen. Here are your options and some issues to think about.
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 would 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.
Will life be different after diagnosis with MS?
Lindsay Harrison, MS Specialist Nurse, and Gail Clayton, Lead MS Clinical Nurse Specialist, talk about what you might like to consider after a diagnosis with MS.
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 communicate 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, or read more about telling people about 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
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.
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 things 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 the 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.
Making sense of MS pack
This pack can support you to learn about MS, the lifestyle and treatments which can help and the health professionals who will support you.
MS services near me
Search, using our map, for nearby MS services, such as: MS nurses, treatment centres, therapists and rehabilitation assistance.
Lifestyle choices with MS
Looking after your health is important when you have MS and you may want to make changes to your lifestyle.
Our BBC Lifeline Appeal
Don’t forget to watch our first ever BBC Lifeline Appeal featuring some of our amazing supporters and presented by Radio 1 presenter Scott Mills.
Last updated: June 2018
Last reviewed: September 2017
This page will be reviewed within three years