It’s not all that long ago that Arnie (my RebiSmart injecting device) came into my life. Now only a month and a half on I feel that our time is coming to an end. We may have a month or two left but I wouldn’t have thought much longer. It saddens me because Arnie has slotted into my life so well. He doesn’t cause me too many headaches (literally) and he comes in gorgeous teal packaging – one of my favourite colours. I find myself saying that classic line – “It’s not you, it’s me”…
It turns out that really is the case. Although I’ve had no problems at all with Rebif or injecting I went for an MRI with dye the week after I started it and now the results are in. The results aren’t really a big surprise to be honest, I knew the scan was bound to show a new lesion because I had a relapse the end of May 2013, a couple of months after my previous MRI. It wasn’t a big relapse compared with the one I’d had in April, in fact it took me a while to realise that’s what it was in comparison – I just put it down to sun burn. So the question was always going to be ‘what will the contrasting dye show up?’.
I had an appointment with my MS nurse last Thursday, it was meant to be just a chat about how the injections were going and blood tests but it turned out that wasn’t the case. I hadn’t had the results of my MRI – I was still waiting for the letter from my Consultant. Still, when my nurse asked how I was and said “we’ve got lots to talk about” I didn’t click. I thought he just had lots of questions to ask me or he was insinuating that I talk a lot! So after I wittered on about how great I’d been feeling and shown him a faint red post injection mark on my arm I felt noticed he was staring at me and nodding slowly as if to say “…and?”. I wracked my brain for what he might be expecting and then it occurs to me I still haven’t had my MRI results (I’d kind of forgotten about them – weird?). “Oh, you haven’t? I assumed you had got the letter” (ironically it arrived the morning after). “Nooooooo” I reply and from the slightly awkward look and shuffling of papers I know what’s coming.
As expected there was an additional lesion but also one that enhances with contrast meaning my MS is still active. On one hand I was surprised because I have been feeling particularly good since Christmas. On the other hand, prior to that I was convinced it would show that I was active so it wasn’t really surprising. Plus, I know that you don’t have to be having symptoms or relapses to have an active lesion. So we had a chat about Tysabri again and the fact that I’m negative for the JC virus, the how’s and the when’s and the percentages. I’m told that a letter will be winging its way to me with the date of an appointment with my Consultant to discuss it further and that I don’t have to make a decision there and then. In my head I’ve already made the decision, actually I’d made it over three months ago depending on my blood test and MRI.
While waiting for my blood test my nurse brings me a copy of the letters I hadn’t yet received. I ask him what I should do once I’ve made my decision and he tells me nothing until I’ve seen my Consultant again, just keep taking Rebif. I tell him that’s not a problem, it’s just I know what my decision is. “I thought you might” he tells me with a smirk. “It’s all about the numbers isn’t it?” I tell him.
It really isn’t Arnie’s fault, only now I’m eligible for the best available treatment for reducing relapses. Whilst I don’t want to have signs of active MS I do want to be able to access the best possible medication so there’s only one thing for it – it’s hasta la vista Arnie.