The Sunday Telegraph - Stella - - NEWS - By Caro­line Wy­att

‘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

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