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HSCT insights: "It wasn't the right option for me"

Lynn Duffy

There are many factors to consider when deciding whether or not to have HSCT. It’s not the right option for everyone. One woman tells us why she decided not to put herself forward for the treatment.

My first symptom was a numb hand. As I was in my final year of exams at university, I ignored it and put it down to stress.

But I got worse throughout the year, with progressive weakening of my right leg, loss of balance, lack of feeling in my torso and left hand, and finally the dreaded bladder problems.

I was sent for a MRI. Then I received a phone call with a diagnosis of likely MS.

Unsuccessful treatment

I’m lucky to have a wonderful neurology consultant. After Copaxone didn’t work for me, I moved onto Lemtrada. I had a great initial experience, but it became clear after a while that I was likely to be a non-responder.

I had another relapse after my second dose. That definitely knocked my confidence. My right leg weakness worsened and my cognitive function took a knock as well.

A big decision

I was then told I was a candidate for HSCT. My consultant pointed out that this wasn’t a decision to be taken lightly. The side effects would be serious enough to require a long recovery period, with time off work that I couldn’t necessarily afford.

There were also physical considerations such as hair loss and increased infection risk. And after all this, there wasn’t any guarantee of improvement in my physical ability.

My consultant also said that I had a 70% chance of becoming infertile from the treatment. Despite being currently single, as a woman in my early 30s this was possibly the biggest factor in my decision. It just wasn’t a risk I was prepared to take.

Looking to the future

Taking all the above into account, I decided to go with the “safer” option of Tysabri, and for now I feel that my condition is thankfully stabilised.

I wouldn’t rule out HSCT as a future treatment option, but for now, it’s not the right option for me.

This blog first appeared in Research Matters magazine. If you’d like to receive Research Matters by post, email [email protected] to ask about subscription. You can also download the full issue for free.