HSCT insights: it made sense to me
I was diagnosed in January 2011, started my first symptoms in 2010. Pins and needles in my left arm. They disappeared but then I got a nasty bout of flu, which is what – I think – triggered my first proper relapse.
An MS diagnosis
I’d been suspicious it was MS. I’d go to the supermarket and drop packets of biscuits in the aisle, because I couldn’t hold on to them properly. Or I’d be eating dinner and keep missing my mouth… tell-tale signs something neurological was happening.
I paid for a private MRI and the results came back the following day – it was MS. I started on Avonex and my symptoms didn’t progress very quickly. But soon noticed I was falling into a pattern of two relapses a year – that’s when I heard about HSCT. I ticked all the boxes.
HSCT felt right to me
When I went on treatment before I’d agonised over my options. The DMTs offered had side effects that made me nervous. But with HSCT, I understood the processes involved and it made perfect sense to me. And although it’s chemotherapy, which I knew could be tough, it’s a treatment that’s familiar. It’s a known risk. I knew what to expect and that was very reassuring to me.
Before I started HSCT, the oncology nurse gave us all this information, and explained potential complications. I had a few blisters in my mouth but it never went any further. I know that’s not everyone’s experience of chemotherapy so I feel very lucky. Weirdly, the only symptom I really had was hiccups! Apparently it’s quite a common side effect of chemotherapy.
A bright outlook
I’m now two years post treatment. Symptoms come and go. I still have some numbness but I don’t have spasms in my spine anymore. I recently had a follow-up MRI and it confirmed that there have been no further signs of active disease since having HSCT. This is what I was hoping for – I’m very thankful. I was ready to return to full-time work 4 months after my treatment.
I’m also doing a PhD, following people’s journeys on HSCT. It’s looking at their different experiences and expectations of the treatment, interviewing them to find out how they came to the decision. It’s a lot of work but it’s great!
This blog first appeared in Research Matters magazine. If you’d like to receive Research Matters by post, email firstname.lastname@example.org to ask about subscription. You can also download the full issue for free.