"Everything is different now" - Roy's HSCT story

Friday 19 October 2018

Roy is 49 and has lived with MS for 15 years. Last year he had HSCT at Imperial College London. This is what happened.

Getting diagnosed with MS

I used to be a courier. Before I was diagnosed I kept noticing when I was driving that my legs were going numb. I couldn’t feel my feet and I had pins and needles from the waist down. It kept getting worse.

I was diagnosed with relapsing MS in 2003, but since then moved on to the secondary progressive type. I was very depressed at the time. I couldn’t accept the thought of being different.

Brain fog and loss of balance

It was only about two years after my diagnosis that I had to start using a wheelchair. I was relapsing near enough every month. It would be different things - sometimes my arm would go numb, or my hand. Other times I’d lose my balance or get brain fog.

I was given steroids and I would just about get back normal and then bang, the whole process would start all over again.

My neurologist wouldn't put me forward for HSCT. He said I didn't fit the criteria and it would kill me.

Finding out about HSCT

I first heard about HSCT when I was watching a Panorama programme. It was a lightbulb moment for me. I just sat on the sofa and started crying. I thought ‘I want some of that!’.

I’d been on a drug called Tysabri. It worked to begin with, but then my MRI scans showed new brain lesions. So I was back to square one.

I went to see my neurologist but he wouldn't put me forward for HSCT. He said I didn't fit the criteria and it would kill me. I was devastated.

A talk at our local MS therapy centre

Shortly after that I met Sarah who’d had HSCT at Kings. She came to our local MS therapy centre to talk about her experiences. Sarah was four months post-transplant, and was on crutches when I met her.

It turned out she’d had the same neurologist as me, and he had also told her she couldn't have HSCT. So I decided to go over his head. My GP gave me my medical notes and MRI scans. Without his backing it would have been impossible.

The risks of HSCT

I started writing to Imperial and had the stem cell transplant in October. They told me I had to be 100% focused that it’s going to work, and I was.

They said they’d never seen a person so determined to get back to how they were. I was really worried about the risks, but didn’t want to think it might not work.

All my family really supported me. I sat down and talked to Jack and Abi, my children, and told them what was going to happen – that there was a 1% chance I could die. But I just wanted that treatment so bad I was willing to risk it. To get out a wheelchair would be everything to me, so they were behind me all the way.

I knew the treatment would be bad, but I had no idea just how bad it could get. It was about two months in total. For half that time I was in isolation.

The treatment

I knew the treatment would be bad, but I had no idea just how bad it could get. It was about two months in total. For half that time I was in isolation because they have to kill your immune system.

When Helen came in to see me she had to totally cover up and wear a mask, and she wasn’t allowed to touch me. I was also given a drug like bleach that sent me a bit loopy.

But it was worth it. After 10 years in a wheelchair, I can now walk again.

Roy Porter outside hospital wearing mask, with his wife and son

My life after HSCT

Just to be able to walk through my front door is incredible. I could never do that before – I had to go through the back patio doors because my chair couldn’t fit.

We went on holiday to Turkey last week and I walked on the sand and went in the sea. I don’t know how to explain what it means, it’s too much to put into words.

I’ve even started volunteering as a police cadet leader. My company medically retired me in 2003 and I’ve always wanted to work again but realistically know I couldn’t manage a full time job. So being able to volunteer like this is amazing. My next goal is to be a special constable!

Just to be able to walk through my front door is incredible. I could never do that before.

Not always plain sailing

But it hasn’t been totally straightforward. While I was having the treatment I had to have loads of different scans, and one of them revealed a tumour on my kidney. I found out the week before Christmas last year.

They found the lump while I was having treatment, but didn’t tell me until I’d come home. If I hadn’t had the HSCT I would never have known. They removed earlier this year and are keeping an eye on me.