Tag Archives: oligoclonal bands

The Secret Diary of Stumbling, Age 37 and 3/4

secret diaryI flicked through my MS diary the other day.

Looking back over the heavily-scribbled (and, yes, tear/coffee/wine-stained) pages, it charts my confusion, fear and ignominious entry into a whole new world, complete with a seemingly impenetrable language all of it’s own.

Trusted health websites always advise you to document everything, from the very first inkling that something is wrong – comes in handy for meeting with a Consultant who may just allocate you seven minutes (including an awkward silence when fumbling taking shoes off – will he notice my holey, mismatched socks?), if you’re lucky. And they may ¬†bark random, medically-sounding words at you.

So I did. A bit like swotting up for appearing on Mastermind, with specialist-subject questions fired every 18 seconds. I failed. Miserably. I was sent home with a leaflet about MS fatigue and the MS relapse telephone number. But I didn’t have MS? Confused? Me too. I didn’t understand the ‘multiple’ in multiple sclerosis. D’oh.

One of my first entries, back in June 2011 is, ‘why am I so hot?? Mum thinks it could be an early menopause, grrrrr. Noooooooooo!!!’¬†Ha! Looking back, that would have been the least of my worries, Tena Lady adventures to one side. And anyhow, I was quite enjoying the flushed-milkmaid visage I seemed to be rocking, after years of hovering just above the ‘palest of the pale Celtic face look’, i.e. close to corpse-like. Or Twilight.

Quite suddenly though, the language gets more technical- I have oligoclonal bands in my CSF, I have lesions in the subcortical, periventricular and deep white matter suggestive of demyelination. I am diagnosed with CIS. Nope, no idea.

According to my diary, I called the MS nurse later that month to ask about the MS hug, an excruciating tightening around my ribs. Normal. What about not being able to write properly? Normal. Pins and needles? Normal. Foot drop. Yup, you’ve guessed it. Over the next few months, I moved from CIS to possible to probable MS, as if I were on an evil, unstoppable conveyor belt.

I called the MS nurse again. Electric shocks in my neck? Normal. Falling over? Normal. Slurred speech? Normal. Stabbing pains? Normal. Wouldn’t it be great to have a pain that wasn’t connected to MS?

May 2012. My last relapse. My hands. Of all things. Crockery was smashed left, right and centre, my mum bought me plastic tumblers and my friends had enormous fun cheering me as I dropped things without warning. And all along, the excruciating, tedious, soul-destroying fatigue.

Late May 2012. Diagnosed. At last. An absolute dichotomy. Utter relief mixed with utter terror. The diary’s closed now. I keep my new notes elsewhere. Thanks to cog-fog though, I haven’t a clue where they are…

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At First I Was Afraid, I Was Petrified…

one tough cookieOn Wednesday, I had an appointment with my MS nurse to discuss how the latest round of Campath had gone.

I had a good chat, did a blood test, made a new appointment for next February and left, happy and relaxed. I’d reached a significant milestone.

This was probably the first MS appointment where the staff haven’t had to virtually prise my fingers from the reception desk and tell me to go home, everything will be fine. I always had just one more question, one more point to raise. I could quite happily have set up camp in the waiting room.

At my very first appointment with the neurologist, I left confused and with a head full of unfamiliar medical terminology, stunned that something so potentially huge could be on the horizon. I wanted to stay in that room forever, boring him to tears as I struggled to make sense of what he was telling me. At appointments with the MS nurses, there was a sense of comfort and safety as I sat in their room, emotions never far from the surface.

Having been thrust into an unfamiliar environment, I very quickly didn’t want to leave. The MS team had an answer to everything. If I could have taken an MS nurse home, I would have. The whole MS diagnostic process probably doesn’t help. Who knew it can take so long? Who, outside of the MS world has an idea what the McDonald criteria is, what oligoclonal bands are?

Not only that, there is the sense that your own world will never be the same. How do you tell your family? How can you cope once you start being bullied at work due to your diagnosis? How bad was my health going to get? The MS team helped me through it all. I was given access to a vast array of support, equipping me to become my own expert of my MS.

It’s been a long two years. When I look back to those frightening early days, I marvel at how far I have come. I’m still me, I just happen to have MS, and I now know exactly how to live with it.

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