My HSCT story

I researched HSCT for about a year before I had it

My MS had started going to a different level, the relapses were worse and it felt as if it was really changing – like it was probably going to go into secondary [secondary progressive MS].

I’d never taken a disease modifying therapy (DMT) but I wanted to hit my MS with the hard stuff first, to play my ace card early. I knew HSCT wasn’t an easy thing to do so I wanted to have it while I was still active and my mind was in the right place for it.

My neurologist at my local hospital was really dismissive. It made me feel pretty emotional – like I was knocking on a closed door and couldn’t get in.

I knew HSCT might not work but I wanted the option of trying it, so I saw a different neurologist in London. He spent time talking me through all the treatments available to me, it was fantastic.

Talking to my family about HSCT

My family were all incredibly supportive once I’d decided – they knew it was a big deal. I gave them enough info but not all the details, it just felt too much for them.

It was crucial for the children to be part of it too. They were worried about me losing my hair but I helped them understand it wasn’t a negative thing.

I didn’t fully process all the risks before I went. I know that’s probably not the right thing to do but I just felt ‘no, it’s not going to happen’. For me, having MS that you know is constantly active is a death sentence in itself. It was slowly getting worse and I just felt I was going sit and watch the world pass me by, that wasn’t an option.

I spoke to my husband and said I wasn’t afraid of death. I didn’t want to die, but I was so afraid of my MS getting worse.

What happened when I came home

Coming back from Mexico and having to face everything on my own has been tough. My MS isn’t any better, in fact it’s probably worse. And now I also have perimenopause or menopause, I’m not sure which yet, so I’m having hot flushes and sweats.

I’ve had moments of worry where I think it hasn’t worked, but it’s just too early to know that. Talking about it has helped. I speak to a therapist and finding someone I can talk to and trust has made a huge difference.

I don’t know how HSCT will work out for me. My desired outcome is to be able to live my life as I want, but I’m also not thinking "I’ll never have treatment again".

I want to raise awareness of it so it’s an option for people. But I’m not saying everyone should have it. It’s a really personal choice, but it’s important people know what’s out there.

Find out more about HSCT