Newly diagnosed with MS – things I wish I knew

‘All MSers are different, it’s not called the ‘snowflake’ condition for no reason.’

When newly diagnosed with any condition, it’s easy to feel lost on what you should do next and multiple sclerosis (MS) is no exception. It’s important to remember there is no right or wrong way to react to a diagnosis as MS affects everyone differently. However, it can help to learn from people who have already experienced what you are going through.

We asked a panel of experienced MSers what they wished they had known when they first received their MS diagnosis.

Claire W

I wish I knew that you need to start exercising as soon as possible to keep the movement and strength going as long as possible. Find a physiotherapist who knows about MS and give yourself the best chance to retain movement.

Physiotherapy at my local therapy centre has been a major factor in my MS and the sooner you start the better. Drugs and treatments can help but once your leg stops working, it’s nearly impossible to get it back.

Nigel

I wish I’d been aware that there are diet and lifestyle programmes which on their own or in conjunction with disease-modifying drugs, have helped many live healthier and better lives with their MS, even vanquishing symptoms altogether.

Lavanya

My diagnosis was over the phone during the pandemic, but I wasn’t fully aware of what MS meant.

I only realised that MS is classed as a long-term disability when applying for jobs. The first step would be to make sure you are aware that this is classed as a disability and that there is help available via benefits.

There is a lot of information on the Benefits and MS page, which was very helpful.

Patricia

When I was first diagnosed, I wish I knew life’s stresses can trigger new symptoms or exacerbate existing symptoms. Eventually, I retired from a stressful profession early, and some symptoms improved, but I wish I had investigated them earlier.

Clare M

MS is not a terminal illness! You will build coping strategies along the way to handle symptoms. All MSers are different, it’s not called the ‘snowflake’ condition for no reason.

If you are newly diagnosed with MS and would like support, our free Newly Diagnosed Choices booklet is available online or ordered as a printed booklet.

Or to speak to a member of our helpline team, email info@ms-uk.org or call 0800 783 0518. The MS-UK Helpline is open 10 am-4 pm Monday to Friday.