Tag Archives: Campath

Feb 21 2013
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Symptoms and Treatment

Hospital Bed Booked…

I had a letter a couple of days ago confirming that I’ve been booked in to hospital for my follow-up Alemtuzumab treatment in July. Last year I was in for five days and four nights.

This year, only three days and two nights. Looking back on it, I was a complete hospital novice. So here’s my list of what I will be doing differently this time around:

  • Pack my own pillows. The hospital ones (if you are lucky enough to get one) are super-thin slices of foam. And that’s being generous.
  • I won’t be taking a huge pile of books. I ended up reading only newspapers and trashy magazines, but I did learn a lot about Heidi and Spencer Pratt’s marriage and Cheryl Cole’s beauty routine.
  • Staying overnight in a Neuro Day Unit means you have absolutely no privacy all day. People come and go for tests and treatments, usually bringing a bunch of family members with them. It’s like having a whole load of strangers parading through your bedroom. Must also remember to lie when people ask me if lumbar punctures hurt (they do, I was a screaming banshee).
  • Cannulas hurt like hell too and it stays in the whole time. Must get it strapped up when not in use as do not want to recreate the Psycho shower scene like last year.
  • Much as I loved the regular tea trolley trundling around at all hours, it tastes awful. Will make regular trips downstairs for the hard stuff.
  • Accept all the sleeping tablets I can get my hands on – hospital beds are uncomfortable, some lights stay on all night and there’s strange people wailing down the corridor.

I will be a calm, confident patient. I know the score this time round. Still a sobering experience though, when the reality of MS really kicks in, far more than just putting up with symptoms on a day to day basis. This is real. The doctor says so.

So when everyone else is packing for a week in the sun, spare a thought for me as I pack my pyjamas, fluffy slippers and selection of snacks to munch on (Jelly Babies, dried banana slices and cookies). God knows what I’ll look like walking through the hospital corridors on my way to book in, struggling with a huge bag and two pillows under my arm.

One other point – do hospitals have wi-fi? How will I stay up to date with my blog and Twitter??

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Jan 25 2013
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Emotions

The Joy of Simple Things

I am surprised to find myself writing this, but there is a lovely, positive side effect of living with MS. Honestly! Of course, it goes without saying this is apart from being in touch with all the fabulous MSers I’ve met through meetings, Twitter and the blog.

I wandered round my favourite charity shop yesterday and picked up a whole pile of books. Regular readers will know I adore reading and am in the middle of setting up an MS book club – Reading Between the Wines. So I took them home, stacked them neatly on my bedside table and sighed, blissfully. So many books to read. It only cost me a few quid, but put a huge smile on my face.

This got me thinking. Pre-MS, my focus was wide and long-term. I would plan my career, The Teenager’s education and hobbies, my studies, my ambitions, my fears, etc. Unwittingly though, I skipped over all the small things that make life so pleasurable and worthwhile. Now, even though I still plan long-term, MS has also narrowed my focus in unexpected ways.

It started with the daily grind of getting through each new relapse. Life suddenly zoomed down to whether or not I could get off the sofa. Anything else was incidental. Would I be able to walk down the street without tripping? Would I be able to cook dinner? Could I manage to put the bins out?

But then something strange happened. Every time I was able to do something small, I felt a huge sense of achievement. Which is rather sad, as often it was only something as simple as making beans on toast, or navigating a wonky trolley round the supermarket. But I still celebrated the small stuff.

Since Alemtuzumab treatment, my relapses have stopped (touch wood). I still have bad days, sure. But what this focus on the small things has left me with is an almost childlike appreciation of things I long took for granted – coffee and a catch up with a friend, reading the Sunday papers from cover to cover, walking in the snow, fixing the mould in the bathroom.

My life has changed for ever, and however cliched it sounds, I really do now focus on what I can do rather than lament over things I am no longer able to do. So thank you, MS, and I really do mean that.

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Jan 16 2013
20 Comments
Symptoms and Treatment

Eye See

Every morning when I wake up, I’m temporarily half-blind in one eye for around a minute until it clears. It’s not painful, just annoying and tricky when I’m already slightly unbalanced on my feet when I first get out of bed. This has been going on for a while now and I’m starting to get worried.

I’ve avoided asking for advice about this as I don’t think I want to know, if that makes sense. Is it another symptom of MS or something completely unrelated? Unlike a lot of people with MS, I have never had optic neuritis or other eye problems and have always prided myself on having near-perfect sight.

I also don’t want to look like a hypochondriac and unfortunately MS can make us feel that way. There are just so many endless symptoms and odd things that can happen. I don’t think I have ever analysed my health in quite so much detail before. I bore my friends and I bore myself and it makes me feel old before my time.

To be honest, since the Alemtuzumab treatment, I have been lucky not to have had another relapse, so all the health problems I have at the moment are minor. The big problem happens when I have several of them on one day. Unsteady balance is fine on its own, but throw in fatigue, twitching and a numb arm and it can be pretty grim.

Anyway, enough of the boring stuff. I am off on a work field-trip tomorrow,so a nice easy day for me. We’re driving 40 miles out to a site where the boss might be contracted to do a lot of the building work with a team of labourers. Obviously if he gets the job, I won’t be commuting there every day, so I will be nice and warm at home, sourcing materials online and perhaps popping down once a week to check everything is running to schedule.

I’ve also got my monthly Alemtuzumab blood test this week, so maybe I will bring up my wonky eye. And pray they don’t think I’m just another hypochondriac….

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Dec 08 2012
17 Comments
Symptoms and Treatment

MRI…Meh

I had a neurology appointment yesterday, to check how I’m getting on since the Alemtuzumab treatment I had in the summer. I always arrive early at hospital to have a wander round the shops in the main concourse and chill with a (revolting) coffee and a spot of people-watching.

I bought some bits and pieces from Boots, including a horrendously overpriced Jamie Oliver sandwich then wandered over to the gift /clothing shop. Who goes to hospital and buys cruise-wear? Or a new handbag?  I decided against buying a new sparkly, spangly scarf and went to W H Smiths and looked at the expensive books and bizarre range of food, including tins of baked beans (always makes me smile).

Anyway, I had some coffee with my mum and watched the clock tick round before heading off to the clinic. The appointment went well, although I had to go through those neurological tests again – you know, the ones similar to the tests American cops make you do when they stop you for drink-driving. Touch your nose with your finger and walk in a straight line heel-to-toe. Luckily, I am normal – and not drunk – and didn’t fall over or make a fool of myself.

However, the bad news is that I will need to have another MRI scan next year. If I had to choose between an hour-long  lumbar puncture and an MRI, I would choose a lumbar puncture any day. I absolutely loathe small spaces. I am claustrophobic beyond all reason. When I was a kid, my sister locked me in a wardrobe, went for lunch and forgot all about me. Pot-holing as a hobby fills me with horror.

I have had two MRIs and have no idea how I got through them. You’re given earplugs, fitted with a guard to keep your head still and told you can keep your eyes open and look in the mirror set above you. Er, not a chance. My eyes were squeezed shut the entire time. You go in head first and it is terrifying. The magnets whizz round making a racket and it’s freezing cold. Each time, I could feel blind panic rising and each time I chucked my  mind to a happy place, anywhere rather than in that Tube of Terror.

So I have seven months to prepare. I will do my yogic breathing exercises, employ visualisation techniques and pretend I am lying on a very cold, hard beach. Any tips from fellow MSers?

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Nov 09 2012
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Symptoms and Treatment

Magical Alemtuzumab

The day I was diagnosed with MS, my neurologist told me that mine was the highly-active or rapidly-evolving sort. I had two choices. The usual disease modifying drugs or Alemtuzumab (Campath). It’s a drug used to treat leukaemia, and in laywoman’s terms, it strips out your immune system, killing the T-cells involved in the MS immune response.

There’s some pretty serious side-effects including a 1 in 3 chance of developing a thyroid problem, but it can halt the progression of MS for at least 10 years by reducing the number of relapses. A no-brainer for me – I was having relapse after relapse with barely time to catch my breath inbetween. It was like being thrown against a wall repeatedly. My body was battered and bruised, I couldn’t walk properly, I slept all the time and fell over a lot.

So, it was an easy choice and I know just how fortunate I was. I was lucky to be under a hospital which took part in the trials. It is still unlicensed for use with MS, but was given to me on a ‘compassionate basis’. All I wanted was to be able to see The Teenager off to university in a couple of years. I didn’t want him to be my carer, or to always be too tired to take him anywhere.

After five days in hospital, hooked  up to an IV, pumped full of chemicals and steroids, I was back home without an immune system for the next few weeks. Now, four months on, a miracle has taken place. I still get tired but I don’t need to sleep the afternoon away, I haven’t fallen over, I can walk (stumble) far better than before and I just generally feel, well, normal(ish) again. I haven’t had a relapse…yet. Touch wood. Don’t walk on cracks on the pavement. I still have a whole bag of symptoms, just not all at once.

So why am I angry? Well, the makers of this wonder-drug have withdrawn it from market, in a bid to relaunch it as an MS-drug and will price it out the reach of most health authorities. Big Pharma strikes again…..

Read Sian’s brilliant blog for more information – she’s pretty angry too.

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