A young man with blue eyes and shaved brown hairlooks at the camera with his head on a white pillow, you can see the top of his black hoody

Having a stem cell transplant for MS was lifechanging - Charlie's story

January 26, 2024

Charlie had an autologous stem cell transplant to treat MS in December 2022. He shared his experience because he’s seen so little information relating to multiple sclerosis and so few stories about this, so he wants to help other people going through it after him.

I was diagnosed with MS in April 2021, but I think I’d had it for about 10 years. There were so many times I felt so tired, and I’d look at my mates who were so full of life. In a way it was a relief to get the diagnosis. I actually started laughing. By this point, I couldn’t walk, I could barely see, and my legs just felt like they were on fire. Finally I understood why.

I was put on a drug called Ocrelizumab (Ocrevus) straight away, which is the strongest drug they have for MS but unfortunately for me it wasn’t working. I was on that for a year and a half, and throughout that time I had a couple of relapses – in MS that means new damage has happened. So, I was given another drug for about three months, just to keep new damage at bay. There was already so much existing damage that was impacting me, and it felt like there was no other option but try the stem cell transplant.

A risk worth taking

The doctors explained that there was a chance that I could have the transplant, and nothing would change. It was a big risk to take but when you’re in that state of despair you don’t really care, you just want to try anything.

It was very scary because a stem cell transplant is usually to treat blood cancer so you go into the ward and it’s just cancer everywhere. Your mind can start playing tricks on you. The isolation gets to you too because you’re just surrounded by four white walls and there’s no escape. There’s so many people around you, yet it feels like you’re on your own because you’re the one going through it. And it was properly rough to go through.

My clinical psychologist was a godsend

I was in hospital for three weeks, then I got out, but I got an infection and had to go back in. Since then, I’ve been fine – I've just been so careful because it’s not worth going back into hospital. The worst bit of the process was the mental side. There were some really bad days. That’s where Jenna, an Anthony Nolan clinical psychologist, came in.

For the past 10 years of my life, I'd been bottling up so much stuff and then you’re in a room for three weeks on your own, you’re faced with no-one else but yourself, and it spurts out. Having Jenna there was a godsend. I just cannot describe how good it was to have Jenna supporting me. I’m so grateful to have had her. Talking is the best form of therapy in the world. If she wasn’t there, I don’t know how I’d have got through it.

Having the stem cell transplant was life-changing

Having the transplant has completely changed my life. I got a letter from the neurologist (who helped me get the transplant) which said that some of the existing damage has actually reversed. That was crazy to me because normally the best you can do is stop more damage happening. You do not understand how grateful I am to be in this situation and to have been able to have a stem cell transplant.

I still do get days when I’m zonked, but most of the time I feel okay. You have no idea how good it feels to just be okay. Imagine you’ve been on a really big exercise, and you’re so tired you just want to curl up in a ball – that's what I felt like 24/7. I also used to shake more than a jelly pudding in an earthquake but now that has all subsided. It's unbelievable.

I hope sharing my story helps other people with MS

I hope more people with MS get the chance that I have and I’d like to see more openness about it. For me, it would have been cool to have heard from someone who had already had a transplant for MS. That’s why I wanted to share my story.

I know how rubbish it is to have MS. It completely and utterly destroys your life. It might not look like that to other people, but it truly does. Going through a stem cell transplant was scary but I want to reassure people that it’s a hard process, but it doesn’t last forever and it’s bloody worth it.