‘I approached my 50th unable to balance or speak’
I lay face down on a pedestrian crossing, knees bleeding where they’d hit the road. I couldn’t get back on my feet, even as the lights changed. It was May 2016 and I’d been on my way to meet friends when I fell without warning. The next day I woke too wobbly to walk, with double vision that took weeks to resolve.
I decided then that I had to do something drastic to halt the progress of my multiple sclerosis (MS), the disease I’d been diagnosed with a few months earlier. My latest drug treatment was clearly not working. I was approaching my 50th birthday increasingly unable to balance, concentrate or speak, or even listen to music or watch TV – the images made me nauseous, while the emotional lability that often comes with MS meant that music made me weep.
I’d had symptoms since 1992. For years I tried to ignore the fatigue and brain fog. Sometimes I’d feel better, and wonder if I’d been imagining it. In 2002 I was told I had clinically isolated syndrome (CIS), after a brain scan showed a single lesion (an area of damaged tissue) had formed after the myelin sheath – which protects nerves – came under attack. I was warned CIS can be a precursor to MS.
I didn’t want it to affect my job as a BBC correspondent covering religious affairs, but in 2015 I went numb down one side of my body for several weeks. A scan showed multiple lesions, and a specialist confirmed I had relapsing-remitting MS. It felt like a life sentence. My family wasn’t surprised – we’d long known it was a possibility. No tears were shed; my parents are of the stiff-upper-lip generation.
The next drug failed to stop another relapse. I wanted to keep reporting for as long as possible, but last September I finally stepped down from my job. My bosses helped me to find other options involving less travel, and with more predictable hours.
My MS seemed to be moving from relapsing-remitting to secondary progressive, as my body became less able to repair the brain damage caused by each relapse. So, after months of research, I decided to take a risk and have an autologous hematopoietic stem cell transplant (HSCT) – a chemotherapy treatment that wipes out then regrows your immune system – at a private clinic in Mexico. HSCT has long been used to treat blood cancers, but its use in autoimmune diseases like MS is still undergoing trials. It destroys the malfunctioning cells thought to be responsible for damaging the myelin sheath, while stem cells harvested from your bone marrow are given back to shorten your time without a working immune system.
HSCT holds the most promise for people having regular MS attacks and it’s now offered to some MS patients at a few NHS hospitals in England under tight criteria. I didn’t qualify, but I met several others who had been helped by it. For around 70 per cent, it stopped their MS getting worse, while for a lucky few it reversed some symptoms partially or even entirely. In Europe the treatment carries around a 0.7 per cent chance of death, and no MS patients have yet lost their lives after having HSCT in England or Mexico.
My family rallied round, raising funds and accompanying me to Mexico. I knew treatment would be gruelling, involving four rounds of chemotherapy, and that I’d lose my hair for several months. The doctors and nurses were skilled and kind, and 28 days later, I flew home. Already, some of my brain fog had lifted and my legs felt lighter.
In the months since, some symptoms have improved, while others, such as migraines and stiffness, are worse – temporarily, I hope. It takes two years before we’ll know whether HSCT has halted the progression. Sometimes I’m racked with pain, wondering if I did the right thing. Other days, I’m sure I did. At least I now have hope that one day I may wake up to find my life sentence has been commuted.
‘My body became less able to repair the brain damage. So I decided to take a risk’ Left BBC journalist Caroline Wyatt, photographed this month