My decision to have HSCT less than two years after diagnosis

Autologous haematopoietic stem cell transplantation, otherwise known as AHSCT or HSCT, is a type of stem cell treatment sometimes used to try and halt the progression of multiple sclerosis. While some who have had the transplantation report positive results, HSCT is not widely offered on the NHS and the process is not without its risks. Because of this, people who opt for HSCT have typically been living with MS for several years. We heard from Dan, who has a rapidly evolving severe case of relapsing MS and chose to receive the transplantation just 20 months after diagnosis.

My diagnosis was quite a shock, to be honest. I’d had COVID in May 2020 and wasn't very well with it so ended up in hospital for a few weeks. One morning, when I was back at home, I woke up and was trying to get my breathing sorted when I noticed that my feet felt really strange. I thought it might have been because they gave me blood thinners in the hospital but the next day my feet went completely numb. They felt like they had a pair of socks on. Over the following two or three days, I started to feel really clumsy and then the numbness spread to the top of my legs.  

The GP thought I had post viral syndrome so I went to the hospital where they told me to come back the next day with an overnight bag. I didn't really think much of it but then the following morning, I woke up feeling so much worse. I had the same feeling all through my face, my neck, my arms and my hands. My hands felt like they had pins and needles but I couldn’t shake out of it. I started to panic and by the time I'd got to the hospital, I was struggling to swallow. I felt like I had a ball in my throat. By the time they admitted me, my arms felt so heavy that I couldn't move them. 

Over that week, they started me on steroids and antivirals even though I hadn’t been diagnosed yet. Within two weeks I had had ultrasounds and what seemed like a thousand MRI scans. Eventually, they hooked me up to high dose steroids and it felt as though all feeling had come back overnight. I felt like a million bucks for about four days after that.

Thanks to all of the tests, the doctors had managed to work out what was going on. But because I had just had COVID, they put me back on the ward with all of the COVID patients. I assume the local neurologist was high risk because when he came to give me my diagnosis, he just sort of shouted it at me from the door of the ward. I didn't even know what multiple sclerosis was. 

The hospital did try and get the MS nurse to visit, but she had been reallocated to the ICU. In the end, all of my symptoms had disappeared and the hospital sent me home. About four or five days later, I'm assuming the steroids had worn off as I started to feel really rough again. I called my GP who luckily for me, is really supportive and absolutely amazing. Because I was getting numbness as well as unbearable pain in my legs and my arms, she started me on Gabapentin. Thankfully, I also got a phone call back from a different neurologist at the local hospital around this time.

My symptoms seemed to fluctuate, although by late July, they were back with a vengeance. I was so weak that couldn't even hold my phone up in my hand. I was back in hospital, being fed and catheterised. I would go from completely healthy one minute to almost bed bound. It was quite terrifying, especially when you've always been very physically fit. 

I had another MRI, organised as an emergency because they assumed something else was going on. It turned out I was having a new relapse and I had active inflammation in my spine and my brainstem, which for the first time, gave me cognitive issues. They put me on another dose of steroids and I felt great, even getting back in the gym, until a few weeks later when my vision went. I couldn't see a thing and I started to feel really weak again. I couldn't get through to the neurologist but the MS nurse was really supportive and suggested that I see a specialist. I went to see a neurologist in London who looked at all of my MRI scans and gave me my formal diagnosis. I’d had around five or six new lesions within three months and four of them were active so I was classed as a rapidly evolving severe case of relapsing MS.

I went back onto steroids and had my first Tysabri infusion in the following January. Unfortunately, I had quite a bad reaction to the DMD and a significant flare up, meaning I was basically bed bound. I tried Tysabri again for another few months but ended up having a further attack. I had no movement below my waist and couldn’t hold my bladder or myself up. After three weeks in the hospital, I was told that they didn't think the Tysabri was working. 

By this point, I was on steroids almost full time but was getting dangerously close to psychosis. I'd read up on AHSCT, spoken to people like Alison and James from AIMS, and had prepared myself for a bit of a battle with the neurologist. As soon as I walked into my appointment, he said, “I think you need to look at a stem cell transplant.” I’d heard so many stories about people having to go abroad that I was shocked, but grateful, at how well the conversation had gone.  

About four weeks later, I got an email telling me that I had been accepted for AHSCT. Due to the COVID situation, I was expecting a delay in starting it but they said, “We'll see you next month.” I started the process with chemotherapy and collection in November 2021. There are risks but for me, the reward of stopping my MS from getting any worse and having a sustained quality of life is well worth it. 

A new trial aims to compare the efficacy and safety of HSCT against highly effective DMDs, Lemtrada and Ocrevus. The study will also help build understanding about how HSCT works in RRMS. Find out how to get involved with the trial by visiting the Star-MS trial website. Alternatively, sign up to our mailing list to receive the latest news and research updates from the MS Trust, straight to your inbox.

• Stem cells and MS - AHSCT - Find out more about how stem cells are used in AHSCT
• Ask the expert: stem cell transplantation - Professor Basil Sharrack, a consultant neurologist, answers some frequently asked questions about AHSCT
• Star-MS trial for HSCT in MS - Find out more about the research
• My journey to Russia for HSCT - Read about Gwen's experiences and the advice she would give to others
• My personal journey with HSCT - Read Chris' account of the treatment process and the impact it had on his MS.
• HSCT for MS - Listen to our podcast on HSCT for MS
• Stem cell treatment in MS - an introduction - YouTube video on an introduction to stem cell treatment in MS
• AIMS - AIMS is the UK’s first registered charity to support UK residents with autoimmune disease and multiple sclerosis, with an emphasis on HSCT