Wednesday 24 January 2018

caught in a vicious circle....

Hey!  Good news!  I think I've worked out where my never-ending infection is coming from.

Quick recap: over the last few winters, a cold has turned into a lingering chest infection that seems to take months to shake off.  This year was initially no different, and my GP was good enough to pretty much put me straight onto to antibiotics in an attempt to shorten the whole process.  This was, she told me, likely to be my fate every winter as long as I was on immune-supressing drugs. Great.

That's the thing about the disease modifying drugs used to treat MS: they try to slow down the progression of the disease by weakening the ability of my immune system to attack my central nervous system.  It seems to work, but a weakened immune system obviously leaves the door open to any and every passing infection.  What a choice.

This year, the chest infection seemed to develop into something else, a swelling of the throat and tongue with little white nodules.  I was treated for a fungal infection (three times), but it didn't seem to make any difference.  I've been working pretty long hours for the last few months, so perhaps I'm just run down. A couple of weeks off with an 8 day break in the Maldives can't hurt.

It was a lovely break, but it didn't shake off my throat problem.  I thought it had gone, but after my weekly injection, it came back before I even had a chance to think about the 30 degree drop in temperature waiting for me when I returned to the UK. 

By this point, my GP is baffled.  I am fit and healthy with a strong pulse and no obvious signs of infection. My throat and tongue were swabbed for a fungal infection and came back completely normal... and yet, here we are.  This damn thing has been hanging around for months.  It's affecting my voice, so I've had to stop going to choir. It's not especially debilitating and it's no longer in my lungs, but it is certainly BLOODY ANNOYING.  Could it perhaps be something to do with the Avonex I've been injecting every week for the last 8 years?


Now that I thought about it, this confirmed a pattern for me: mouth and throat start to feel like they're getting better, then I inject and it comes back, getting better over the course of the week until I inject again and then the cycle repeats.  I spoke to my MS Nurses - my gateway to the neurology team at the hospital - and they brushed me off, telling me to book a blood test and to wait and see (as if waiting and seeing since September wasn't quite enough waiting and seeing...)

I injected again on Monday night, and literally within an hour, my throat swelled and the white nodules were back all across the back of my mouth.  This is surely not a coincidence. I spoke to the nurses again the next morning.  It appears that 8 years is a long time to be injecting Avonex and my body might be developing some sort of a reaction to it.  The told me to stop injecting immediately and we'll see where we are in a month and if things clear up.

I suppose this is progress.  It's possible that my MS might strike in the period when I'm not covered.... but if it gives my body a chance to finally shake off this bloody infection or reaction or whatever it is, then that's got to be a risk worth taking, hasn't it?

This coming week will be the first time in eight years that I haven't injected myself. I've injected in a camper van in Australia and New Zealand, in a tent in Africa, in Cambodia, in Vietnam, in Canada... all over the world in all sorts of places.  But next week, it stops.

What a palaver.

Meanwhile, as long as this has stayed out of my lungs.... marathon training has continued as normal.  Because, you know...

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