MS: What happens after diagnosis?
You and your diagnosis
Everyone responds differently to being diagnosed. It’s not unusual to experience many powerful emotions as you learn to live with MS. Feelings can change from day to day but you can learn to work through your feelings in your own way, in your own time. Feelings of shock, denial, fear, anger, anxiety, loneliness, sadness, uncertainty and guilt are all a normal part of coming to terms with a diagnosis of a lifelong condition like MS. You may feel a sense of relief or acceptance, especially if you’ve spent a long time trying to find out the reason for your symptoms. You may experience a complete lack of emotion or feel numb.
There’s no right or wrong way to react, it’s very personal to you. How you react and adjust to living with MS often follows how you respond to and face other problems in your life, but learning about the possible emotional effects of a diagnosis of MS can help you cope.
If you’re really struggling to come to terms with your diagnosis let your GP or MS nurse know, they’ll be able to talk it through with you, or refer you to further support such as a counsellor or neuropsychologist.
What will happen next?
MS is a highly variable condition that affects everyone very differently, and MS teams around the UK work in slightly different ways, so what happens next will depend on a number of factors.
What you’d like to happen. There will be choices you can make.
What support your MS team can offer and how soon. You might meet your MS nurse immediately after diagnosis, but it’s more usual to have to wait several weeks.
How active your MS is at the moment. You might want to look at symptomatic treatments or whether disease modifying drugs (DMDs) that aim to alter the course of your MS are an option.
What else is going on in your life at the moment.
The people you have to tell
There are only a few people and organisations that you must tell about your diagnosis straight away.
If you drive, you must tell the DVLA (Driver and Vehicle Licensing Agency) who issue driving licences as MS is a notifiable medical condition which may affect your ability to drive safely. They will send you a form to fill out and may contact your doctor or ask for an assessment. You may be able to keep a full licence, or you may be issued with a short-term medical driving licence for between one and five years, at which point you’d then be reassessed. Your licence may be revoked if the DVLA thinks you can no longer drive safely because of your MS symptoms.
The second group that you may need to inform are companies that have issued you with insurance, including most health and motor insurance policies. Check the small print of your policy to see if you need to tell them straight away or only when you come to renew the policy. If you’re not sure, give them a call as not informing them could risk making the policy invalid. You may be able to claim under some health or critical illness policies as soon as you’re diagnosed.
Lastly, in some jobs, for example if you’re in the armed forces or drive a passenger or heavy goods vehicle, you’ll need to tell your employer straight away. Some jobs require a certain standard of eyesight or medical fitness. Check your contract or employee handbook to see if this applies to your job.
After that it’s entirely up to you who you tell, when you tell them and how much you disclose. You might find you want some time to yourself to adjust to your diagnosis and learn more about MS before you share your diagnosis with other people, whether this is family, friends or colleagues. When you feel the time is right for you we have many information resources available that you can share with children and adults to help them understand your MS.
Will life change?
Life doesn’t stop at diagnosis, although it may feel that way at first. Your work or education, family and social lives will continue, but perhaps not in quite the same way as before. You’re probably worried that MS will make a big difference to your life and the choices you have. It’s not possible to predict exactly how you’ll be affected or how it will impact on your future, as everyone’s MS is different.
Some of the things you might need to think about are simple everyday things like learning to plan around symptoms such as fatigue. Other things might be more life transforming such as deciding whether to start or add to a family, or whether to make changes at work such as reducing your hours or moving jobs entirely. Just as everyone does, you’ll need to review your options and make choices or changes from time to time.
Getting support
Support from health professionals
Who you see, and how often, will depend on how active your MS is, what symptoms you’re experiencing, what treatments are available and how your local MS service works. Your own preferences should also be taken into account, where possible.
You’ll probably see some health professionals who specialise in MS, like an MS nurse, and possibly some who specialise in a particular treatment, such as a physiotherapy. You should see your neurologist for an annual review and your GP may be involved in some of your MS care, as well as looking after your general health.
Support comes in many forms, whether this is prescribing medication, providing practical advice or equipment, or counselling for the emotional impact of living with MS.
Your next appointment
When you were diagnosed, you may have been told who you’d see next and when. If this didn’t happen, you could ask your neurologist’s secretary, MS nurse or GP if an appointment letter doesn’t come through within about a month. You shouldn’t be left in limbo, perhaps feeling anxious, for too long.
In some areas, people meet their MS nurse immediately after diagnosis. In others, you’re given more time to adjust to your diagnosis and to think about what questions you might want to ask, or what your needs might be, before you see the nurse. Unfortunately, not all areas have an MS nurse. If this is the case for you, your GP will have an important role in your care.
Some services can offer appointments at short notice if your MS becomes more active or if you think you might be having a relapse. You may be able to contact your MS nurse by email or phone, although you might have to leave a message.
It can be good to write your questions down before your appointment so you don’t forget anything. If you want, you could take someone with you to your appointment, both as moral support and a second pair of ears, that way you can compare your understanding of what was discussed afterwards. Find out more about making the most of appointments.
You can find details of your local MS services on our MS services online map, it gives details of MS nurses, hospitals with MS services, physiotherapists and occupational therapists (amongst others) where they’re available.
Is it an emergency?
MS symptoms rarely cause an emergency, although initially when you experience new and unknown symptoms it might feel like one. Your MS team will understand that you’re anxious about your MS, especially in the early days after diagnosis, and will support you to get used to its unpredictable nature. It’s important to let your MS team know if you’re experiencing new symptoms or think you’re having a relapse, so that treatment can be considered.
Ask your MS nurse and neurologist about the best way to contact them with your concerns or questions.
Support from friends and family
Naturally your family and friends will want to help or look after you, but it needs to be done in a way that’s acceptable to you. It can be helpful to explain how you feel about your MS and how unpredictable it can be. It’s good to have support in place but you also need to feel in control of your own life.
I didn’t tell my friends and family until a couple of months later when I had adjusted to the news. This was on a one-to-one basis so I could deal with any emotion, including my own.
Support from the MS community
You might be keen to share your experiences or ask questions of other people with MS, or you may prefer to focus on your existing network of family and friends. It’s a very personal choice. Experiences can be shared face-to-face through support groups or online through social media and blogging.
Exploring treatment options
Your health professionals may suggest starting treatment soon after diagnosis. This may be to help with individual symptoms, or to reduce the impact of relapses if you have relapsing remitting MS. You may feel ready to make treatment decisions straight away, but if you need more time your MS team should support you with this.
The earlier you start treatment, generally the more effective it’s likely to be. However, a few months delay is unlikely to be critical unless your MS is very active.
Treating symptoms
Treatments are available for the symptoms of MS no matter what type of MS you have. Talk about the options for treating any symptoms you’re experiencing with your health professionals. Treatment might involve taking medication, therapies such as physiotherapy, or a combination of both.
Disease modifying drugs
Until recently, disease modifying drugs (DMDs) were only used in people with MS who experience relapses to reduce the number of them, their impact and the MS disease activity seen on MRI scans. However, certain disease modifying drugs are starting to become available for some people with progressive forms of MS.
Looking after yourself
Support from other people is helpful but there’s a lot you can do yourself to be as well as possible. You might like to review your lifestyle and consider making changes.
Some people with MS find that complementary therapies can help them manage their MS as well as giving them a sense of control over their body. Commonly tried therapies include aromatherapy, massage, mindfulness, Pilates, reflexology, Tai Chi and yoga.
Initially it can be difficult to judge if any changes to your health are MS related or not, but this becomes clearer with time. You’re still susceptible to other illnesses and conditions, so it’s important to keep up with your normal health screening appointments. Don’t accept that everything is due to your MS if you believe otherwise.
Moving forward
Different people have different challenges. It’s normal to need time and space to adjust to your diagnosis. Maintaining a positive outlook and getting good, reliable information you can trust can make a big difference; so can being flexible and taking a problem solving approach.
People who’ve lived with MS for a while say that learning to live each day as it comes, finding things to appreciate and avoiding comparing your life to others can all help you move forward. Some people highlight the good things that have come out of their diagnosis such as looking after their general health better through diet and exercise, choosing a new life path they didn’t anticipate, meeting different kinds of people and learning to think more creatively.
The choices are yours to make! You have the option to take control of the things within your power, whilst learning to accept the things you can’t control. These can all help you learn to live well with your MS.
After four years in ‘limboland’, a definite diagnosis enabled me to know for sure what I was dealing with and to get on with my life.
