A relapse, and a change of tack

We’re nearly halfway through September, the kids are back at school, and there’s a nip in the air. Time, once again, to wonder where summer went. It’s always the same, and those early autumn conversations are oddly comforting in their repetition, but this year I really have missed out on summer and feel oddly as if I’ve been sped past July and August in a time machine.

All was well for the first week of the school summer holidays – which was also the first week of our family holiday in France – and then I started having some odd sensations. A patch halfway down the right side of my back went numb, then the numbness spread around to the front of my ribcage. I wondered whether my swimming costume was too tight – I’d been wearing it from breakfast to dinner every day. Then the numbness started to spread downwards, over my right buttock (sitting down became slightly surreal), down my leg, right to the sole of my right foot. At the same time, my left hand, and left leg were becoming increasingly weak to the point where I couldn’t use a fork and didn’t have the dexterity to turn my indicator on while driving.

Up till then, I’d assumed I had primary progressive MS, because as far as I was aware I’d never had a relapse – and here were a set of symptoms that seemed to be that relapse finally happening, after I’d been told I had MS. Frightening, bizarre, surreal.

The symptoms continued all through summer, abating for a week or so and then coming back with a vengeance after I’d gone back to work, resulting in me being signed off by my GP. I was a quivering wreck, unable to type with my left hand, put my shoes on, cook, or walk properly. But just as I had hit rock-bottom, with the reality of MS slaying all my optimism, my first appointment with a neurologist specialising in MS finally arrived – and not a moment too soon.

It would have taken half a day to talk about everything – all the symptoms I might or might not have experienced in fifteen years or maybe longer, the tests I might have, the drugs I could or could not take, the plans I would have to make. To the neurologist’s credit I got through almost everything in less than half an hour – and the upshot given the relapse I’d just had, even though it was the first I’d been aware of, was a diagnosis of relapsing-remitting MS and not the primary progressive type I’d assumed.

My impression is that it’s not really possible to be sure of a diagnosis at this point. At this point, I believe all I can know is that I have MS, and it might take years to find out what kind. The positive thing to come out of the consultant’s decision though is that I can  have disease modifying drugs, and maybe  they will slow the MS down – maybe for long enough for a drug to be found that can stop it in its tracks, maybe even for a drug to be found that could restore the function I’ve lost already. I’ll have another MRI scan, this time with ‘contrast’ injected into my veins that will show how active the lesions in my brain are, and then I’ll be recommended a drug to take.

So the rollercoaster has taken a wholly unexpected turn and is now travelling in a completely different direction. Wherever this ride goes, it’s evidently not going to be boring.

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