I want people with MS to know about HSCT

Fri 17 May 2024

Andrew Mulholland

Andrew travelled from his home in Scotland to Mexico to have HSCT (haematopoietic stem cell transplantation) in May 2023, just four months after being diagnosed with MS. He wants others with MS to know about the treatment, and for it to be more available in the UK. 

About three years ago, I noticed my legs and waist were going a bit numb. I went to A&E, and after an MRI they found a lesion at the bottom of my spine. I was diagnosed with Clinically Isolated Syndrome. They gave me a week’s course of steroids, but that didn't really do anything except stop me sleeping. 

Over time I got more feeling in my leg, my right foot and my waist, it was just my left foot and my lower left leg that was still numb. Then about two years later I woke up with pins and needles in my fingers. I was sent for another MRI and three months later, in January 2023, the neurologist told me I had MS. 

Before I was diagnosed, I didn't know what MS was, or that it's something you could get. I thought it was something people were born with. Unless something like this affects you, you don't really look into it. Then, as anyone would probably do, I started Googling how to fix it.

Deciding on treatments after the MS diagnosis

When my neurologist suggested I start Tecfidera (dimethyl fumarate), I read about all the different disease modifying therapies and their efficacy. It seemed to me that Tecfidera was reasonably effective but I didn’t think it was the best one for me. 

Then I discovered HSCT. I read the information on the MS Society website and I joined a couple of online HSCT groups. I also did a peer support call with the AIMS charity. On YouTube I followed the story of one man’s HSCT experience which was super helpful. From everything I read and saw, it seemed like it was the only treatment that could potentially stop it instead of just slowing it down. Though I realised this wasn’t a sure thing. 

Read more about HSCT for MS

I spoke to people who’d had HSCT

I spoke to a woman who lives nearby. She’d had HSCT privately in Mexico about five years ago. So my wife and I met with her for lunch and I picked her brains about what's involved.

I wanted to make sure that HSCT was a safe treatment to have abroad. I spoke to a lot of people who had been to Mexico and Russia. I also found people who had it done in Sheffield, privately and on the NHS.

Then I went to the neurologist and asked if I could have HSCT. He said that I didn't qualify because I hadn't failed any drugs yet. That didn't make sense to me. I didn't want my MS to progress while I tried different drugs, and to potentially become more disabled.

Seeking HSCT

So after doing all the research, I decided not to take Tecfidera, but instead get HSCT privately in Mexico. I’m lucky that I could afford it. The treatment came to £43,000 and I paid another £3,000 for travel. But I decided to fly first class for extra space on the way back, which wasn’t essential.

My neurologist tried to persuade me not to go. He said the treatment could be highly effective for some people, but it wasn't something he'd recommend going abroad for. But they never even told me about it as a possible treatment – I only discovered HSCT through my own research. I don't feel I should have to Google potential treatments.

I know HSCT sounds extreme. It involves resetting the immune system with chemotherapy, but the procedure was fine for me. Of course it’s more complicated for some people, but I strongly feel that it should be the patient's choice

It felt weird having to go abroad to do it. I was told that even to have it privately in the UK, you still have to meet the same criteria as the NHS and fail at least one DMT. Before this, I’d never considered going abroad for any medical treatment.

My experience in Mexico

I was diagnosed in January and I booked to go to Mexico in May. The treatment took four weeks.

View of a busy town

After the first session of chemo I had a double burger at the clinic. I felt virtually normal. I had bone pain during some of the injections to help collect the stem cells, which apparently is a sign that it is working. The treatments were quite draining, so I experienced a lot of tiredness. I also felt quite out of it and hot at times during the chemotherapy. But for me it all felt worth it.

I was quite healthy and I wasn’t too affected by my MS when I went in, which could have made a difference to how straightforward it was for me.

My wife stayed at home with my 10-year-old daughter. Leaving them or the four weeks was the hardest part. Luckily I could play Minecraft online with my daughter from the clinic!

Care during my treatment

I hired a caregiver in Mexico so there was someone with me 24/7. I paid a little over £2,000 to have someone dedicated to my care for four weeks around the clock. They made sure I got my tablets and that I had all the electrolytes for the chemo.

The health professionals told us we didn't need to isolate or live in a bubble, but that we should generally be careful. There were also some foods you aren't meant to eat. I didn't eat blue cheese or runny eggs, but I went out for food a week after I got back to the UK. And I went back to work in the office after three weeks because I felt comfortable with the risk.

Aftercare

My neurologist didn't want me to go to Mexico. But he said he would support me afterwards, and we discussed that before I went. He arranged for haematology (blood experts) to see me when I got back. And my GP prescribed the antibiotics and antivirals I needed for six months. They also did the necessary blood tests every two months.  

They were super supportive but I know that's not the case everywhere. Many people struggle to get this kind of aftercare from their GPs and neurologists. It seems to be a postcode lottery. 

Before the treatment I had a headache every day. Now, a year later, I get a headache maybe every two weeks.

Post-HSCT

I used to stumble on my foot a bit because of the numbness, but my left foot feels almost normal now. I can only feel numbness a tiny bit at the bottom if I move it. And my fingers are pretty much fine. You wouldn't be able to tell I had MS. My most recent MRI shows some improvement in my spinal cord. And though we don't know for sure, I think this could be related to the changes in my foot I've noticed.

My bloods were fine about two months after the treatment. I was a little bit anemic when I first came back but the hematologist said that was quite normal, and it cleared up by the next blood tests.

There have been some downsides. With the chemo you lose your hair, but it’s grown back.  HSCT can also affect fertility, but I've got a family already so I’m not too worried if it has. I would absolutely recommend others consider HSCT it if it suits their condition and circumstances.

I want people to know about HSCT. I want people to be given the choice. I feel it's the only treatment that might actually stop the progression of MS as opposed to slow it down.

Raising awareness

We shouldn’t have to turn to Google to find out about treatments. I’d like it to be more accessible. I think it could also be cheaper for the NHS to offer HSCT as a one off for certain people, instead of drugs for the rest of their life.

I've joined a charity in the US to help spread information about HSCT, too. I want to share my experience and the charity allows people to talk to others that have been through it.