Tag Archives: Alemtuzumab

Dec 31 2012
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My Ramblings

The Last Day of The Year…

Well, here we are, the very last day of the year and what a year it’s been. I’ve been diagnosed with MS, had Alemtuzumab treatment, lost my job and started a new one. As one door closes, another one opens and all that. A whole fresh new year is ready to be discovered. Exciting!

So why oh why are two of the most miserable songs ever written all about New Year? Honestly, if I hear ‘Happy New Year’ by Abba one more time, I will be in danger of becoming seriously depressed and full of Nordic gloom.

And I’m dreading U2’s ‘New Years Day’ playing on an endless loop all day Tuesday. Where’s the happiness? Where’s the looking forward to a bright, shiny new year?

A random sample of Abba’s ‘Happy New Year’ lyrics include:

  • Here we are, me and you, feeling lost and feeling blue
  • It’s the end of the party, and the morning seems so grey
  • Seems to me now, that the dreams we had before are all dead, nothing more

Makes you want to crack open the champagne and fire off some party poppers, eh? I guess New Year’s Eve can be a bit depressing – we look over the past year, sigh over some of our decisions and ponder our regrets. According to the newspapers, most of us will be at home, celebrating with a Marks and Spencers £10 meal deal. We’ll count down to Big Ben and toast the new year in with a shrug of the shoulders and head for bed at 12.10am.

But this year, I want to celebrate my achievements and the fact that I survived everything life and MS had to throw at me. I’m still here! And I’m stronger and happier than I have been in a long time. The MS community has embraced me and I have found incredible support from other MSers. My family and friends have been amazing. What’s not to like?

So, sorry Abba. I won’t be singing along to your dirge today. I will be having a nice glass of wine, chilling in a wine bar with jazz playing in the background. Goodbye 2012, I’m sure 2013 will be one of my best years yet….

 

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Dec 09 2012
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Emotions

Who Cares?

I went to an interesting and well-organised conference last week which focused on services for carers of people with MS. A whole range of organisations were represented and I went along as I trained as an MS Society support volunteer. I am passionate about newly-diagnosed people and their families having access to services and groups and my role is to signpost them and provide a friendly ear, as someone who has been through the system.

We all met for registration, coffee, croissants and a catch up then went through to the conference. There were some brilliant talks and insights and so far, so good. Then something happened which had me in bits. A very young teenager took to the stage to explain what it was like to be a young carer for her mum, who has MS.

Halfway through speaking, the girl was overwhelmed with emotion and began to cry. The entire room was hushed and stunned. Although she seemed to be supported by some charities, it was clear this was a girl in danger of a nervous breakdown. She went to school after helping her mum and worried the whole day about whether she had fallen or was in need of help. She had been bullied at school too, which research shows happens to almost 70% of young carers. There are 175,000 young carers in the UK, with 13,000 of them caring for over 50 hours a week.

Like most newly-diagnosed people, I was horrified at the thought of my son becoming my carer, and touch wood, I am lucky. I don’t need to ask him for help and although he is aware a I have good days and bad days, I get along with support from my family and friends. With the  Alemtuzumab treatment I had, I will probably not need ‘care’ for the foreseeable future, if at all.

The girl’s dignity and courage was astounding and I hope hearing her plight will spur others to find her more help. Four days on from the conference, she remains in my mind. I feel churlish complaining about my tiredness or weak arms.

If anyone knows a young carer, please reach out. They need care too.

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Dec 08 2012
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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 29 2012
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Symptoms and Treatment

Needle Fiddle Faddle

Until my epidural, needles held no fear for me, but trying to stay completely still whilst being racked by labour pains is no laughing matter. I swore off needles for life, there and then. Ha! Now it seems needles feature quite a lot in my life, another side-effect, brought to me courtesy of MS and yesterday I was off to the surgery for another blood test.

Last year, on the basis of a suspect MRI, I was whisked off for a lumbar puncture. People are divided about these. Some have great experiences and sail through them, tutting loudly and wondering what all the fuss is about at us lot who scream their way through them. It wasn’t the doctor’s fault that he’d never done one before. The needle (huge, vile thing) kept hitting bone. No words could possibly begin to describe the pain.

Over an hour later, I loosened the grip on my mum’s hand, tears pouring down my face, in absolute agony. And if I thought that was horrific enough, worse was to come. The skull-crushing  lumbar puncture headache. It lasted a week. It literally (and I don’t use that word lightly), felt like my brain was being squeezed. Probably the most painful experience of my life.

This summer, whilst in hospital having Alemtuzumab treatment for MS, I had a cannula inserted and it was to stay in my hand for a week. A week!! I managed four days until it fell off in the shower, recreating a massacre scene, blood spurting everywhere. As part of the monitoring process, I have to have a full blood count taken every month for five years, plus I’m due my second and hopefully last dose of Alemtuzumab next year.

I’m an old hand at this now –  every time I see a doctor or nurse, I automatically roll up my sleeve.  Is it slightly sad though,  to be disappointed not to get a sticker for being so brave?

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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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