I used to be anti-treatment
Thinking about treatment
The first time I discussed treatment with my neurologist was a few months after coming out of hospital, following a bout of severe dual optic neurosis.
I wasn’t very keen to be on treatment at that stage. I didn’t like the idea of taking something because I knew there was no cure for MS. I didn’t want the condition to take control of my life, and by taking a treatment I thought it would do just that.
But I had to be realistic that my MS was quite active, so I decided to try a treatment.
20 years ago
The first line treatments back then were all injections – there weren’t as many options as there are nowadays. I think that’s what scared me the most: having to inject.
When I started on an injection once a week I had to get my mum to do it for me because I was so fearful of needles and couldn’t do it myself. It was really rough. I had quite a few side effects like headaches, feeling tired and unwell. So I eventually decided to try a different treatment.
I’ve tried quite a few different treatments, but I don’t think I gave them much of a chance. I found faults in all of them because I was so anti-drugs.
I took a few breaks from treatment, up to three to four years at a time. My short term fix if I had a relapse was to go on steroids, but I developed a severe allergy to them. That really scared me because steroids had been my go-to solution to get me out of relapses.
Taking control of my MS
That’s when reality hit and I realised I needed to take ownership of my condition. The prospect of having to use a wheelchair is a big fear of mine, and I thought if I’m not doing anything to keep my MS at bay, how can I make sense of that?
So then I went from being anti-treatment to thinking I need and want a treatment!
My current treatment
I’m on an infusion now, and I definitely think it’s the best treatment for me. You have to go into hospital for it but I quite like it. You’re really looked after and monitored, and it’s only once a year.
The neurologist has since told me my MRI showed that, for the first time, I had no new lesions and no active lesions. I got super excited and realised I have to look at the bigger picture. Even if I’m still having MS symptoms, long-term I’ll see better results if I keep going.