My journey to Russia for HSCT

19 November 2021


Gwen was diagnosed with primary progressive MS (PPMS) in 2009. After her condition progressed over the next five years, Gwen looked into what options were available to her. In 2014, she travelled to Russia, becoming the third Briton to receive HSCT at a facility there. Here, Gwen told us about the experience and what advice she would give to others considering the same.

When they said they could offer me treatment, it gave me hope for the first time since the day I've been diagnosed.


Can you tell us a little bit about the start of your MS journey?

I started off getting symptoms as though I had really bad vertigo. I saw my GP who though I had an ear infection but I was treated for that, and it didn't help. Then I started getting problems with my legs. They didn't hurt, they just stopped working. I suspected then that I knew what it was because I already knew of somebody who had MS. I went to my GP and asked to be referred to a neurologist. It took a couple of attempts, but after I was referred, I was diagnosed quite quickly.

At the time of your diagnosis, treatment options for PPMS were even more limited than they are today. Did your MS team discuss any alternatives with you?

No, I felt a bit abandoned to be honest. I wasn't given any literature or pointed to anybody. They said, “We’ll refer you to an MS nurse but it might take a while.” I was really cast adrift, although I probably dealt with it quite well, because I have a science background so I'm used to doing my own research.

I got to the stage where I was choking a lot, even on a sip of water.

At what point did you start looking into what else was available and come across HSCT?

That was a couple of years later. As my disability worsened, I ended up having to be medically retired from my job, which was very distressing because I loved working in a school. I started thinking, hang on, there's got to be something out there. I found research and scientific papers from around the world and I read them. That was the first time I'd heard about HSCT. After that, I did lots of research about it, including speaking to haematologists. 

I got to the stage where I was choking a lot, even on a sip of water. I was starting to panic about the thought of it getting worse and decided I may as well go for it if I could find somebody who would treat PPMS.

You went abroad for the transplantation, is that right?

That's right. I wasn’t able to get a referral from my neurologist so I went to Russia. When I started looking into it, there were quite a lot of countries that offered HSCT for MS but nearly all are for relapsing remitting MS

There were only two places that were prepared to treat me and my PPMS. One was Russia and one was Israel. Russia was a lot cheaper than Israel, and Israel do what's called myeloablative HSCT, which is a more severe treatment. It's much more extreme and harder to recover from.

I couldn't afford Israel anyway so the choice was made for me. I concentrated on finding out as much as I could about the treatment in Russia and spoke to other people who had been through the experience.

You've got to be prepared that it might not work after having spent all of that money.

What was it that ultimately made you go ahead with HSCT?

I knew I was going to get worse if I didn't go. When they said they could offer me treatment, it gave me hope for the first time since the day I've been diagnosed. 

However, it's important to be really careful about your own risk attitude. You've got to be prepared that it might not work after having spent all of that money. You've got to think to yourself, “If all it does is stop my progression, would I be happy to live like this for the rest of my life?” You can't assume that there'll be any improvements.

What were some of the things that you had to consider when looking into the treatment?

I was very lucky that I had total support from my husband who stayed at home and looked after the house and the children. We also paid for the whole thing from his pension fund and I was lucky to have had that option. 

One of the more difficult things was organising a visa to go to Russia. Everything else apart from the flights was included in the cost but it was quite nerve racking until I got there. I was met at the airport by a driver from the hospital and I relaxed once I got there and met the doctor. I felt very safe.

Did the team in Russia openly discuss how the success rate of HSCT on people with PPMS can vary from those with RRMS?

I don't think there's a difference in outcome so much as there is in the percentage of people that it works for. HSCT works for fewer people who have progressive MS with the success rate at about 70%. For relapsing remitting, it's about 85%. After I had all of my tests, the doctor said he was convinced that HSCT would benefit me so I was happy to go ahead.

What were some of the emotional and physical changes that you noticed during the process?

I was really tired all the way through although physically, it wasn't as difficult as I thought it was going to be. I felt a bit nauseous from the chemotherapy and had some bone pain when my stem cells were reintroduced but it was manageable because I knew it was temporary. 

There were several other international patients from Australia, America and Norway, and we kind of bonded over our shared experience. When I wasn't having treatment, I was mixing with them so emotionally, I felt quite well supported.

Were there any additional steps you had to take when you returned to the UK to help your recovery?

I was so tired when I came home that I slept for the first month but you do have to be careful as it takes a good six months for you for you to be able to stop thinking about the infection risks and things like that. I wore a mask when I went out and I didn't have anybody coming to the house for the first month. Obviously, my teenage children were still here but they didn't bring friends back. It was a bit like what everybody's been going through recently with the COVID thing.

I can have a meal or a drink with other people without being afraid that I'm going to choke.

It’s been seven years since you had HSCT. What sort of changes have you noticed to the progression of your MS in that time?

When I was going through the treatment, I noticed that my fatigue and brain fog improved. After I came home, gradually my foot drop improved. I had a tremor before and that's gone. Things like the choking didn't go away immediately but now I can have a meal or a drink with other people without being afraid that I'm going to choke. 

My mobility is still not great and remains about the same as before I went but there are so many little things that have improved that it was worth it. I haven't had the marvelous improvements that some people say they have but I think it's important not to expect that. I try to emphasise to people, that it’s not 100% guaranteed to work so you've got to be prepared for that.

What advice would you give to someone currently considering HSCT themselves?

Do your research. It's not the Holy Grail. It isn't a miracle cure. You have to decide whether you think it would benefit you. If you don't do it, will you regret it afterwards?

There are a lot of scams out there so it's also very important to do your due diligence and find out the best place to go. People will take your money so you want to be sure that you’re finding somewhere legitimate.

About HSCT

AHSCT for relapsing remitting MS is currently available on the NHS in Scotland, Wales and England. It is offered at a small number of centres in England, but the number of people who are accepted for treatment is extremely small. AHSCT is not currently offered on the NHS for people with progressive MS.

People are usually only accepted if they continue to have relapses even after trying one or more of the disease modifying drugs. In addition, people with very aggressive MS, who have developed severe disability in the previous year, may be accepted for AHSCT.

You may be able to access AHSCT by taking part in a clinical trial, although you may be selected for the control or alternative treatment group rather than the AHSCT group. For example, the Star-MS clinical trial starting this year will recruit nearly 200 participants at 19 research centres around the UK. The study will compare highly effective disease modifying drugs with AHSCT over a 24 month period.

If you are considering AHSCT, whether through the NHS, a trial or privately, you would need to be referred by your usual neurologist or GP to the relevant team.

Find out more

Like to hear a different opinion on HSCT?

This story is one person's account of HSCT. However, many people report different experiences of this treatment.

Want to hear more about HSCT? Read our expert information on stem cells and MS (HSCT), or click the stories below.

Other experiences