Tag Archives: lumbar puncture

Aug 20 2014
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Emotions

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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Jul 22 2013
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Symptoms and Treatment

Wish Me Luck As You Wave Me Goodbye….

lucky catI’m off to hospital today for my second Campath (Alemtuzumab) infusion and have spent the weekend preparing myself (read more about the treatment HERE). The Teenager’s in London, the house is quiet and my bag is packed.

This year, I’m taking no chances. The first thing to go in the bag were two soft and squishy pillows. Last time around, one of the nurses hunted high and low to provide me with an NHS pillow and came back holding a sad slab of foam.

I’ve also got my bags of dried fruit and nuts, a family-sized pack of Jelly Babies, some Belvita breakfast bars, a mini hand-held fan, a stack of books (which I probably won’t read) and some earplugs.

I’ve had a lovely, relaxing weekend. On Saturday, my boss took me out for a pre-Campath dinner at a local marina. This is in sharp contrast to last year’s Campath treatment, when I was working for a boss who would sack me for having MS just a few months later. There were no good wishes, no cards, no phone call to ask how I was doing. Thankfully, that’s all ancient history.

I held a Listeria Feast yesterday, eating all the foods I won’t be able to enjoy for three months – salami, sushi, coleslaw, fruit salad, raw carrots and a huge tub of soft serve ice cream. Also some camembert, which I don’t even like, but if I’m going to be denied it for three months, I was going to eat it for good measure (nope, still don’t like it).

Staying for three days on a neurology ward means that my days will be filled with answering questions from nervous-looking people booked in for lumbar punctures. Hmm, tricky one. If I lie and say it’s a breeze, they’ll quite possibly drag me out of bed and beat me up afterwards. If I tell the truth, based on my own horrific experience, they’ll run screaming from the ward before the needle’s even gone near them.

So, wish me luck. I’ll be back in the blogging seat again on Thursday. Just hoping I can still tweet from my hospital bed…

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May 05 2013
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Symptoms and Treatment

In The Beginning, There Was Cake….

scrummy yummy cakeSome of you have asked how my whole sorry MS story started, so here is the potted version.

Like many things in my life, it began with cake.

Leaving a friend’s house after enjoying a slice (okay, two slices) of delicious cake. I turned to say, ‘thanks for the cake!’ but it came out as ‘thanks, Kate’. Odd. I tried again. Same thing.

I went home perplexed. The Teenager was away for the weekend and over the course of the next two days my speech deteriorated, I was exhausted and my balance was shot. I knew something was seriously wrong.

I eventually ended up in hospital, talking gibberish. The clues were all there. The overwhelming tiredness over the previous six months, the dodgy walking, the simplest tasks taking forever. Throw in a childhood in Scotland and a parent with MS and I guessed the rest.

I assumed I would be diagnosed there and then (ha!) but that was just the beginning. Until I had a further relapse, I was in Limboland with no idea how long I would stay there. It took a year to hear the dreaded words, ‘highly active/rapidly evolving relapsing remitting MS’.

That year was probably the worst of my life. The lumbar puncture was a vile, medieval torture, the MRIs were terrifying and I lost count of how many blood tests I had. I lay awake at night, rigid with fear, worrying about the future. A lot of people say the day they are finally diagnosed is both the best and worst day of their lives. I agree. After all the waiting, the anxiety, the fears, it was a relief to finally have some answers. But it doesn’t make it any easier.

My main priority was to keep life going on as normal as possible for The Teenager. I would sleep in the afternoons, setting my alarm so I was awake just before he got home from school, duvet tucked away behind the sofa. I hid my anxiety. I became best friends with the pizza delivery man.

Those were dark, dark days. They are behind me now and an uncertain future still lies ahead, but isn’t that true for everyone? And as for cake, well, it certainly hasn’t put me off…

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Feb 09 2013
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My Ramblings

A Helping Hand in Limboland

sad stick womanSometimes I wish I could go back in time to that terrifying morning when I woke up and couldn’t speak properly or walk in a straight line. If I knew then what I know now, I would have been a very different person. For someone whose father had MS, I knew surprisingly little. I had no idea what  CIS was, what an MRI would show, why I had to have a lumbar puncture.

I was in Limboland. I might develop MS. Or I might not. It is a cruel waiting game. I didn’t understand the ‘multiple’ part of multiple sclerosis. I left the clinic after that first relapse utterly petrified. What was I to do now? I had been given a couple of MS leaflets and information about how to contact the MS team. But if I didn’t yet have MS, why would I be given that? I was bewildered.

I accessed a few forums, one dedicated to Limbolanders and I gained a huge amount of information (a very, very special mention to ‘Rizzo’ who was amazing in answering all my queries). The forums were a lifeline, but at a cost. A lot of people had been stuck in Limboland for years, some well over a decade. Despair and anger oozed from the forum. We were all in a nasty, dark waiting room and I would feel a painful stab of strange envy when someone posted that they had been diagnosed, and were now leaving us behind; they had the golden ticket.

I read everything I could about the McDonald criteria, ticking off the four points bit by bit. Finally (but only 10 months later), I had my ticket. My brain threw up more lesions, far too many and I was diagnosed. Possibly one of the best and worst days of my life.

I wish I had been handed a step-by-step guide to life in Limboland, clearly explaining the whole diagnostic process, the frustrations, the waiting. Could someone please publish this? Letting us know that you have to go through so much, from first relapse to eventual diagnosis. Break us in gently. Please don’t throw us in the deep end.

So, to everyone diagnosed with MS, look out for the Limbolanders. Treat them kindly. Be an inspiration and show them we are not so bad, it’s not so scary. There is a life after diagnosis. Aren’t we all proof of this?

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Oct 05 2012
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My Ramblings

Chocolate dreams

Chocolate haunts me. Last night a giant Jaffa Cake chased me down the road. When I woke up, I could almost taste it. I adore chocolate and it worships me in return. So much so that it hangs around my thighs, stubbornly clinging on for dear life . I know we need to go our separate ways, but it’s a really comforting friend to have around. Always available, cheap and comes in endless varieties.

Multiple sclerosis has given me a great excuse – when the worst has already happened, who cares if you treat yourself now and again? So many other things seem more important than whether I am knocking back the chocolate buttons by the bucket-load. Just had an excruciating lumbar puncture? Have a family-sized Galaxy bar. Fallen flat on your face in a packed restaurant? Order a profiterole surprise to share then grab both forks.

In a desperate bid to curb my cravings, I came up with a cunning plan. Advent calendars are on sale now. What if I were to buy one and only pop open two windows a day? Plus, I’ll get some early Christmassy vibes going. I reached Christmas Eve that same night and put the pillaged calendar out for recycling. Ok, Plan B. Eat no chocolate all week, then have a blow-out on Friday. I was cured! I ate so much of the stuff, I vowed never to eat it again, until I woke up on Saturday, noticed there were still a few Maltesers left in the packet, and I was lost in a chocolate haze once more.

I know, I could keep on trundling out the old MS excuse for ever, but where do I draw the line? I don’t want to give in just because I have MS. Perhaps because I have MS I should look after myself more, not less.

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