“MS has made me look at my life and think about what’s important”

4 February 2019

As BBC defence correspondent, Caroline Wyatt was used to being a stone’s throw from some of the world’s most dangerous war zones. But nothing could have prepared her for the daily battle that is MS. Here, Caroline tells us about adapting to life with MS, her experience of stem cell treatment, and her hopes for the future.


Like many people I had suspicions that there was something very wrong from a much earlier stage, long before the actual diagnosis. In 1992, when I had burning and numbness in my arms, I was told that it was RSI - a repetitive strain injury. But it continued and I had other odd symptoms for a long time.

In 2001 I was sent for a brain scan and was diagnosed with clinically isolated syndrome. I was told it could become MS but wouldn’t necessarily. By 2015, I was starting to get really quite ill; I was very tired all of the time - I never felt as if I’d slept; I was getting increasing pain in my arms and I was getting a lot of migraines. Finally I went to see the neurologist again who, after a lot of tests, said that it was definitively MS.

In a lot of ways it was a relief to get the diagnosis because you do start to think you’re going mad. The symptoms come and go and I went to see a lot of different doctors and they’re all convinced that it was something to do with their speciality. It really wasn’t until I was told definitively this is MS that I felt able to kind of look back and say ‘So this was how it progressed over time.’


The main symptom that I’ve always had has been fatigue. I could never understand why I was so exhausted all of the time and even if I hadn't done anything particularly exhausting, I would wake up in the morning feeling as though I had run a marathon.

Now, as the MS has progressed, the pain has got much worse. Optic neuritis is another symptom I experience; I sometimes get a blurring in one eye and there’s pain in both eyes.

There’s not an awful lot you can do about many of the symptoms. You can take drugs to relieve some, but I’ve found that, for example, the nerve pain drugs make me so foggy and so unable to think that I couldn't work and take the drugs at the same time. I personally would rather work and put up with the pain.

Adapting to life with MS

I have become much less of a planner. I used to have my entire calendar planned out and crammed the days with as many things as I possibly could. Partially, I think, because of a sense that time might be running out to be able to do all the things I wanted to do in terms of travel and work. But I am much better these days, because I have to be, about planning in breaks, not putting too much in the diary, only having one meeting a day and being prepared to cancel things if I don’t feel up to it, which I was very reluctant to do in the past. I think some of that is down to acceptance; you do have to accept you can do less but equally I think I’ve probably become slightly more bolshy about saying to people: ‘This is what I can do and this is what I can’t do’.

I would be really happy if people knew more about MS, understood more about MS and there was more research into it, because the figures may not be large but the impact that it has on people’s lives is enormous.

Working with MS

I always wanted to continue to work, so even when it got quite difficult, I just felt that for me A) It really helps pay the mortgage, but B) the work was and remains a really important part of my identity. I think that’s probably the case for a lot of people. 

I have been very, very lucky to work for the BBC, which is a big employer. In terms of making adjustments, even before I had the diagnosis of MS, I was able to go and talk to my bosses and say ‘These are the things I can do, these are the things I can’t do’ and as that’s changed over time they’ve been very good at responding. I think it’s only now that I am going into secondary progressive MS that it’s becoming harder to explain. MS is very difficult to explain to employers because one day you might be able to do something but the next day you can’t. Some days I can still walk down to the Tube, but there are other days where I get down to the bottom of my stairs and I just can’t go any further.

Stem cell treatment

Like many people I saw the BBC Panorama programme presented by my colleague Fergus Walsh on stem cells and thought that looks interesting. I had already taken two MS drugs that hadn’t actually helped. I was getting to a stage where I was going downhill very fast and certainly my impression was that I was going from relapsing remitting MS into secondary progressive MS.

I looked into it, did some more research and decided to go ahead with it. I wasn’t accepted here in the UK for the Sheffield clinical trial, because I didn’t meet all the criteria, so in the end I went abroad to Mexico in 2016. It is not something I would necessarily encourage people to do, because I think it’s much more readily available, under quite tight criteria, here in the UK now. But I felt it was worth trying for me, partly because of my age. One of the issues with it is that you might well lose your fertility, but I was 50 at the time so that wasn’t a problem for me. The treatment itself is chemotherapy; it is a harsh treatment but then again so are some of the MS drugs.

It gave me probably six very good months straight after the treatment where my brain fog lifted for the first time in years which was amazing. But sadly over the last few months I have started to progress again, so nearly two years on I’m pretty much back to where I was before the treatment. I do know people for whom it has halted progression, equally I know people who’ve been worse as a result and I know of one person who died. It is a risky route to take but I think the more research that goes into it the better, because stem cell transplants and stem cell treatments may be something in the future which are used much more as a first-line treatment.

It was a difficult decision and it was made in conjunction with my family and friends, and I did go and talk to consultants. I think it is important to go and talk to your neurologist but also to a haematologist because it’s a haematological speciality. In the end, I felt that the risks were worth it for me, but that was an entirely individual decision and had I had children or dependents then perhaps I wouldn’t have done it. I think as with any treatment that is still undergoing trials, a treatment that doctors don’t necessarily know exactly how it works, or why it works for some people really well and not for others at all, I would recommend that people research it. Talk to people who’ve had it, talk to the specialists and read the medical research.

Hopes for the future

I would be really happy if people knew more about MS, understood more about MS and there was more research into it, because the figures may not be large but the impact that it has on people’s lives is enormous. It’s still a disease that is a mystery, where they don’t really know what’s caused it, and although there are many more treatments available now, they don’t cure it, they don’t take it away. I also hope there can be more MS specialist nurses in the future. They can help so much on a day to day level where you can’t ring your consultant, but if you are having a new symptom or you need advice on something, then MS nurses are essential.

MS is very difficult to explain to employers because one day you might be able to do something but the next day you can’t.

Advice for someone newly diagnosed

If you have just been diagnosed with MS, don’t panic. Because whatever you imagine, it’s unlikely to get that bad. I have now had MS for probably 26/27 years and despite my imaginings earlier on about how bad I would get how fast, it hasn’t got that bad that fast and it’s all been deal-able with.

You will have to mourn or to grieve the person that you were, the things that you could do and some of the things that you can’t achieve, but you can still do an awful lot and you can still achieve an awful lot. I think the one thing that having MS has done for me is make me examine my priorities and that hasn’t been an entirely negative thing. It means that you look at your life and say, ‘Well what’s important? Is it my family and my friends? Is it to a degree my work? How can I work around these things so that I can do enough with my family but still enjoy the work that I do?’

So I think it makes you take a really long hard look at yourself and your life

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