It’s New Year’s Eve and a time when I usually reflect on the outgoing year – I’m going to save that for tomorrow.
Today I thought I’d share my trip to the National Hospital for Neurology and Neurosurgery. Leftwing Idiot and I went for an emergency appointment with my consultant and a colleague of hers who’s a specialist in dystonia, which is what’s affecting my hands. My consultant’s been very responsive since the trouble started on Boxing Day, keeping in regular touch by email and phone to monitor my condition.
Like Tourettes, dystonia’s a neurological condition in which incorrect signals from the brain cause uncontrollable muscle spasms. It originates in the basal ganglia, the same part of the brain that Tourettes is believed to come from. The dystonia specialist said I was a good example of how the two conditions overlap.
While both specialists are familiar with this crossover, having seen many people with Tourettes (including me) with dystonic tics, neither had seen anything quite like what I’m experiencing now.
They decided to try injecting me with a drug to see if it could release my hands. The nurse took me to a side room to give me the injection and thoughtfully suggested I should have some lunch while we waited to see if it’d worked.
Rather than loosening up, my hands became progressively tighter and excruciatingly painful. Leftwing Idiot tried to distract me with the sandwich he’d got me from the canteen. But as the pain intensified it became clear that the injection hadn’t worked – although the whole experience might’ve successfully put me off cheese sandwiches for life.
I was given a different drug to ease the pain and my consultant came through to discuss the next steps. I have to take a powerful muscle-relaxant very regularly over the next week to see if this makes any difference, and then I’ll go back to the hospital to see the dystonia specialist again. We talked about whether I should be admitted to hospital, but because this wouldn’t change the treatment or the speed at which it would take effect, I decided I’d be more comfortable at the castle. The hope is that because it’s an acute attack of dystonia it’ll be reversible.
This is an incredibly uncertain start to the New Year. All I want from 2014 is friendship, creativity and laughter – with those in place I know I can weather any turbulent times.