(Photo: Holly Ford)

I first started to have problems walking on my right side in April 2017. In May that year I started to work out to help with weight loss.

My walking got worse, but I put it down to overdoing it at the gym.

It wasn’t until a personal trainer (PT) at the gym noticed I kept leaning to the right when I was lifting weights that I started to think something could be wrong.

Concerned, he told me to go to the doctors. I did, but they didn’t think there was a problem, so I carried on as normal.

A few weeks later, another PT pointed out the same problem and I went back to the GP.

Finally, in August, after going back and forth to the doctor a few times, I was sent to hospital for an MRI. I was diagnosed with demyelination in September.

I was prescribed steroids and told to contact them if I got worse. When I finished the steroids I still wasn’t back to normal.

Through November and December that year, I was worse than ever. My legs were so weak my fiancé, Chris, was having to carry me up the stairs to bed at night.

I was finally diagnosed with primary progressive multiple sclerosis (PPMS) in March 2018. I’d heard of MS, but not properly and I didn’t realise what it meant, or that it affects more than 100,000 of us in the UK.

I think my mum has taken my diagnosis worse than me and that makes me most upset. MS doesn’t just affect those who have it – my family and friends have all lived the experience with me.

Overall, my mobility isn’t great. I have a stick and I furniture-hold to move around the house as it’s not easy to use the wheelchair inside.

When I heard that the first and only licensed treatment proven to slow the progression of this highly disabling condition has been rejected by the NHS because its deemed too expensive – it was devastating.

We’re waiting for the council to help find us an adapted house – I need a wet room and widened doors for my wheelchair.

I’m also waiting for a personal independence payment (PIP) assessment as I now have a medical driving licence and need an adapted car with hand controls. Without a car I’m having to rely on my mum to take me to and from work every day.

It is frustrating being so dependent on others, so having any treatment would mean an awful lot to me.

You can’t imagine what it’s like to get a diagnosis of PPMS and be told there’s nothing for you.

So, when I heard that the first and only licensed treatment proven to slow the progression of this highly disabling condition has been rejected by the NHS because its deemed too expensive – it was devastating.

I know ocrelizumab won’t make me better, but it could stop me from deteriorating.

Chris and I hope to get married soon but I don’t want my MS to get worse and I really want to be able to walk down the aisle when the time comes.

The fact that this drug could help me do that, but I might not have access to it, is heartbreaking.

Chris has been so supportive throughout my whole MS journey. When we heard that this drug could be made available in the UK we were hopeful but now our dreams have been dashed.

Having treatment would put my mind at ease about the future and things like starting a family. If I get much worse I will struggle to look after myself, never mind a child.

Right now, this is my only potential treatment to do something about this horrible condition.

I have received so much support from organisations such as the MS Society – who are driving research into more and better treatments – and I’m proud to be part of the #SpeakupforMS campaign.

I encourage everyone to sign their petition that calls on NHS England, NICE and Roche to work together to ensure that ocrelizumab is available on the NHS for everyone with PPMS who could benefit – and hopefully help a lot of people like me access a medicine that could change their future.

If anyone is worried about the decision or has questions, the MS Society also has a free helpline – 0808 800 8000.

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