"More treatments for progressive MS would give me confidence for the future"

When I was diagnosed with relapsing remitting MS in 2015, I felt like my clock had started ticking.

I read leaflets from the hospital about the different types of MS. And I knew that most people with relapsing remitting MS develop secondary progressive MS over time.

I needed new treatments for progressive MS to come sooner rather than later.

A quick progression

My MS changed to secondary progressive quite quickly, in 2022– just seven years after my diagnosis.

The same year, siponimod (Mayzent) was approved for some people with secondary progressive MS. So the timing worked out for me.

My consultant was very keen to get me onto it as soon as he could. And the treatment has been absolutely fantastic. I’ve had no new symptoms, no side effects, no relapses. I saw my consultant recently after being on the treatment for a couple of years and he’s really happy with my progress too.  

My MS symptoms were dismissed at first  

I was 27 when I was first diagnosed with relapsing remitting MS. For years before that I’d been going to my GP and saying there was something wrong with me. My legs were heavy and they hurt.  My walking had changed. When my husband and I first met, we’d do a big country walk of about four or five miles for an afternoon. Then slowly I started not being able to go that far. My legs would get really heavy at about three miles, and then at two miles, and then at a mile.  

But everything was brushed off by doctors: it's psychosomatic, it’s because you’re stressed, you’re getting older... I finally went private through my work health cover and had an MRI scan. Within six days I was diagnosed with MS. After seven years of being ignored and dismissed - gaslit, almost - it was empowering to be told there was something wrong. 

My treatment journey

I was put straight onto Copaxone (glatiramer acetate) after being diagnosed, I was on it for three years, until I got pregnant with my daughter. Four weeks after giving birth to her, I went back onto it and I had a horrific allergic reaction. I came out with hives head to toe, it was horrible.  

My consultant prescribed Tecfidera (dimethyl fumarate) which I was on until the summer of 2022. At that time I felt like I was getting worse, little by little. I was looking back at photos of things that I had done but I couldn’t remember doing them, because my memory was so bad. And my arms were getting heavy and weak again.  

So when I was told it was secondary progressive, the diagnosis was again quite validating.

How MS impacts my day-to-day life  

Fatigue is my most disabling symptom. It stops me more than anything else. The pain in my legs is pretty horrible, but I’m on many different medications for the pain, spasticity and spasms. We've tried a few things, but we can't stop the fatigue. I’ve referred to it as needing to have a ‘hard reboot’.  

This is my way of explaining that I need more than just a sit down. I often have to lie in a dark room with no distractions such as my phone or the TV and just power my brain down for a while. Like a computer when it’s switched off. 

My short-term memory has got so bad my MS nurse has referred me to see a clinical psychologist to do some memory tests. I’m definitely looking for some new strategies to cope with it, as what I’ve been doing isn’t quite working.  My husband calls it my ‘squirrel brain’ because in the middle of a sentence I’ll literally interrupt myself to say something else. And then I don’t remember what I was saying to start with.  

Playing with my daughter  

My lack of energy means I can’t run around and play with my seven-year-old daughter Freya as much as I’d like.

We build a lot of Lego and have tea parties and teddy bear picnics in the front room. We build random things and have competitions: who can build the tallest tower or the best robot.  They’re nice, calm activities.

Why I joined the Octopus trial

I would like more confidence to make longer term plans. It would help if we found more treatments that slow people’s progression.

That’s why I joined the Octopus trial: If we can treat MS harder and quicker it’s going to potentially stop people from having that progressive phase of the condition. If by chance I’m on the medication in this trial that gets approved, then brilliant. But if not: I did my bit, I helped.

I’m so proud of the funds my family has raised

I raise awareness of MS at work. There’s about 68,000 permanent staff – we’re a big company. I blog about how it affects me and how it affects everyone differently. People always seem to get on board with that. Some staff signed up to do the May 50k fundrasier and the company match funded it. 

My family has done a lot of fundraising, which I’m so proud of. My dad was a professional musician for most of my teenage years and childhood, he’s retired now. But he came out of retirement to do some ‘pay as you feel’ gigs and he raised over £10,000! 

Why supporting the Stop MS Appeal is so important 

I know the chances are small, but part of me is always going to worry that Freya ends up with MS. We need this research to try to find out what things increase someone’s risk of MS and then to jump in quick trying to stop the lasting damage.  

I would say there’s been an explosion in research in the last few years. We’re getting closer.  

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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