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It would change my life to have a treatment that stops MS progression

Amelia

I never know if I’m going to wake up tomorrow and not be able to use my legs or my arms.

I have symptoms every day – I don’t remember the last time I felt fine. I get fatigue, pain, numbness, spasticity in my legs. I get so many things it’s hard to put into words.

To help ease my symptoms I take 26 tablets a day. But these medications aren’t treating my MS. There’s nothing I can take to help with progression.

I feel scared about the future as I never know when things are going to get worse. I’m always living life on the edge. If there was a treatment that could stop progression, I’d be so happy I would cry. It would be life changing.

I was diagnosed with MS when I was 19

I was really upset about it at the time. I knew something was wrong with me but I didn’t expect it to be a lifelong condition like MS. It made me feel strange and I didn’t know how to react at first.

MS has affected my life in lots of ways. I used to work full time. I used to go out all the time with my friends. Everything's changed. I haven’t been on a night out for over a year, and I’ve unfortunately had to stop working.

I'm 25 and my life is completely different to how my friends live.

On a good day I can go for a short walk to the shop. But even then I get sensory overload and feel like I need to escape and go into my bedroom. So even on good days things are a struggle.

What supports me to live well

I live with my mum and little sister. I’m close with all my family and I feel really supported by them.

Me, my mum and my sister like to watch films together. My sister loves reading so she’ll read a book to me. She helps me dry my hair and if I’m feeling rubbish she’ll bring me my medication or a drink. She’s a great help. I try and spend time with my friends as much as I can, even if that is only once a week.

I set up an MS Facebook group two years ago - so far there’s over 6,500 members in the UK and Ireland! I can manage it in bed in my PJs. People say they feel really supported by it, which is amazing and makes me so happy.

I wish I could have one day with no MS symptoms

There’s times I think: why me? But I deal with MS by trying to think positively, and make the most of what I have.

MS is unpredictable, so you have to get on with your life as much as you can. You never know what MS has for you in the future.

Find out how MS researchers are working on three ways to stop MS

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