Wednesday 12 February 2020

you are the unforecasted storm...

As an addendum to the post below, I received a letter the other day from the neurologist. Apparently, my November 2019 MRI scan shows no evidence of new disease activity.

This is clearly excellent news.

From the very beginning, my MS hasn't seemed to follow the usual patterns. Although I have technically been diagnosed with relapsing-remitting multiple sclerosis, where patterns of disease activity are followed by periods of remission and partial recovery, my MS has always behaved a bit differently. Most of my initial symptoms can be traced to a single lesion in my cervical spinal cord, but I haven't had a clear relapse since that first one and I don't seem to have developed any new lesions (the scarring on the brain or spinal cord left by the inflammation). That said, although I haven't developed any radically new symptoms, I have seen a general (albeit fluctuating) worsening of the ones that I do have. Relatively speaking, compared to others, I'm doing great... but the disease has changed my life. As well as the muscular symptoms of weakness, numbness and pins & needles, I also now take a pill to manage bladder urge and self-cathertise every night to ensure that my bladder is completely empty before I go to bed (I'm also careful of the volume of what I drink after about 20:30 at night. No more last orders at the bar for me). These things are different from what they were when I first developed symptoms in 2005. I may not have visible signs of disease activity in my MRI scan, but you can now see them in the way that I walk.

I think what this shows us is how complex a condition multiple sclerosis is; how it's an umbrella term for a massively varying set of symptoms and presentations. It's a handy label to put on people, but every single person seems to experience the disease differently. It's amazing how much the doctors and specialists do know, but equally very clear how much they don't know too.

I'm doing well. There's no sign of new disease activity in spite of the fact that I've now been off all medications relating to my MS for a couple of years now. It was a risk to stop injecting the drug that may (or may not) have been slowing my disease progression, but for the time being, it seems to be a risk that has paid off.

Long may it continue.

In the 43 days of 2020 so far, I've run 155 miles. I don't have much to complain about.

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