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I have MS. What should I do now?

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  1. Who needs to know about my MS diagnosis?
  2. Choosing treatment
  3. Making life choices
  4. Find the right information
  5. Find other people in the same situation

Every week around 130 people get the news that they have multiple sclerosis.

If you have recently been given an MS diagnosis you might be filled with a whole range of different emotions. You may also be unsure about what you should do next, and who you need to tell. This article looks at things you should do, and some things you might want to do after diagnosis.

Who needs to know about my MS diagnosis?

You may wish to take some time to absorb what a diagnosis of MS means for you, and decide who you want to share the news with. You may wish to order our leaflet on telling people about your MS diagnosis.

There are just a few people that you legally HAVE to tell after receiving an MS diagnosis. 

• If you drive or are learning to drive you must tell the DVLA (Driver and Vehicle Licensing Agency or DVA in Northern Ireland) who issue driving licences. MS is just one of a long list of notifiable medical conditions which may affect your ability to drive safely. It’s not a slight on your driving ability, so try not to take this personally.

The DVLA will send you a form to fill in 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 will only be revoked if the DVLA thinks you can no longer drive safely because of your MS symptoms.

• You may need to inform any companies that have issued you with insurance, including most health and motor insurance policies. Have a look at 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.

• Some places of work - in some jobs, you’ll need to tell your employer about your diagnosis straight away. This includes the armed forces, emergency services and drivers of passenger or heavy goods vehicles. These jobs require a certain standard of eyesight or medical fitness. Check your contract or employee handbook to see if this applies to your job.

You can still be you. It feels like you've lost everything at first but you will find your way back to you – Suzi

Choosing treatment

Your MS Team might suggest starting treatment soon after diagnosis. This may be to improve your symptoms or to reduce the impact of relapses using disease modifying drugs (DMDs). 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.

If you would like to look at your DMD options, a good place to start is MS Decisions, our online tool where you can compare the different treatments that might be on offer for you. 

If you are looking for treatment for individual symptoms you can use our treatment finder. You deserve to have your symptoms managed, so don’t be afraid to ask your your MS team what can be done to help you. 

Lifestyle changes, the right DMD, the right kind of exercise, diet and mindset will all help improve your life with MS and you can still go and have a beer with your mates… maybe just one or two though. - Ann

Making life choices

When it comes to lifestyle choices, the advice for people with MS is the same as for everyone – eat healthily, exercise sensibly, try not to drink too much alcohol and don't smoke. We have useful resources on diet, exercise and life choices you might find useful.

In fact, if there is one thing you really should consider it is giving up smoking. We know that people with MS who smoke are likely to experience more frequent relapses, more rapid disability progression and faster brain shrinkage than non-smokers with MS. Smoking tends to make pain worse in MS, and also put you at risk of developing other serious health conditions.

There is some good news however; it is never too late to quit smoking. Stopping smoking can reduce many of the risks listed above. Every smoke-free year decreases your risk of progression to a greater level of disability, and ex-smokers have the same risk of progression in MS as non-smokers.

Find the right information

When you are newly diagnosed, well-meaning people might bombard you with information that they think might be useful. Not only can this be a bit overwhelming, it can also sometimes come from unverified sources. There is a lot out there about MS, and not all of it is true or fact checked. It’s good to make sure that the information you read is from reliable sources.  Also, listen to people who know about MS. You may encounter a wide range of opinion but use your judgement and choose wisely.

The MS Trust has research-based information on all kinds of lifestyle and treatment issues, including physical and mental wellbeing, posture and alternative and complementary medicines. You can also search our A-Z of MS for information on specific topics, and get in touch with our Enquiry Service if you need further information on anything to do with MS.

Find other people in the same situation

Think about joining an online community for people with MS. There are so many out there, including some specifically for the newly diagnosed.

As in life, you may encounter all sorts of opinions and views online, and everyone’s journey with multiple sclerosis is different. Although the path for one person might not be the same for you, hearing from people who have been where you are now can feel very supportive.

We suggest that you could start by joining our MS Trust Facebook group, or you can have a look at our support groups page for other online and offline communities.

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