Together we can make a big difference for everyone with MS

I work at NatWest and we’d partnered with the MS Society to raise funds. Someone asked me if I’d like to audition for a TV ad for the Stop MS Appeal. And I thought, OK, it could be a bit of fun.

Find out more about the launch of our Stop MS Appeal and TV ad

The ad featured people singing a version of Fleetwood Mac’s song ‘Don’t Stop.’ The lyrics connect to our hope that a cure will be found. I can remember singing during the interview for the casting and just thinking: “This is going to be a disaster.” But on the day of the filming, it just felt like something's happening here that's going to make a difference. We also did a fab photo shoot and felt like film stars!

Taking me back to my diagnosis

Talking about my diagnosis on camera was more difficult than I thought it was going to be. I think I cried. It's because talking about it brings you back to that moment.

I was in recovery from a back operation when I completely lost my eyesight in my right eye. This can be a very rare side effect of the type of operation I had. But with MS in my family, and after googling it, I thought it could be a sign of MS too – maybe optic neuritis. When my eyesight came back, we knew it couldn’t have been a side effect of the operation, because that would have been permanent.

I have private health care through my work. My ophthalmologist offered to order an MRI scan to set my mind at rest.

Unfortunately my brain looked like a Christmas tree with multiple bright lights all over it, which were the active MS lesions. So I had a second MRI scan by an MS neurologist who found a further two lesions. And I was diagnosed with MS two weeks later.

My family history

When I was diagnosed, I was thinking about how my dad only had one eye, so he was partially-sighted. My mum had MS and they both lived their lives. I thought I know I can cope with it. Because I've seen my parents have both these things.

So there was part of me that thought: “No, I'm fine, I'm fine.”

Managing my MS

I’ve taken the disease modifying therapy (DMT) Tecfidera (dimethyl fumarate) since my diagnosis.

My symptoms haven't changed much in the last five years. But they've increased, so my medication has too, to deal with them. For symptoms of muscle cramps and spasms, I now take a combination of three medications. I have been using CBD oil, which worked for me. But this new combination is working well and I don’t need the oil at the moment.

The cramps used to wake me up at night. To help ease them, I’d have to get up and march about for a bit. That's probably the only time that I've thought: “I really, really hate this. I hate having MS.” 

Since my new medication mix, I’ve slept through! It feels like when I first got my baby (who is now 25) to sleep through the night.

Recent changes in my MRI scan

In the ten years since my first MRI scan, they’d only found one new lesion.

But just recently, a scan showed a second new lesion – and the first one on my spinal cord. In the last 12 months I’ve had walking problems for the first time since my diagnosis. This new MS activity is a bit of a blow as now I need to swap from Tecfidera to a second level DMT.

What’s been really useful in thinking about a new treatment is the MS Society’s DMT decision tool. I’ve gone through that and will discuss what I’ve learnt with my MS crew.

Changing my mindset

As a child, I was brought up not to moan about things. Why make other people unhappy? So not being able to smile and look happy in the TV ad made me feel quite uncomfortable. I felt it wasn't like me. But of course the reasons for the appeal are all true, so in the end I was 'happy' to oblige.

My mum had MS when there were no MRI scans. And one of my cousins on my dad's side had progressive MS. Neither my mum or my cousin had any DMTs available to them. But I've had a DMT from year one.

It was a brilliant experience, surreal but lovely. When the film was screened, I got to meet the other people with MS who’d taken part. And we talked to major sponsors who watched the advert. That made it feel special.

Watch Nikki's behind the scenes interview

Why people should keep donating to MS research

I hope we can find what causes MS and stop it happening. Even reverse it. I know that's the Holy Grail for people with nerve damage.

If there was something that could stop it or reverse it that would be absolutely fabulous.

If we unlock the new treatments for MS, it's not just one illness. It's like cancer - you unlock it for one or two and it gives people different ideas. Scientists can apply it to other things. New treatments and research in some conditions can benefit others.

I think that if you hear about a chance to make a difference and you know somebody who’s been touched by it, do something.

If everybody did something small, it would add up to something bigger.

Let’s give one final push to stop MS, together

We’re closer than ever to finding treatments that work for everyone living with MS. Will you help fund the treatment revolution?

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