Tag Archives: Alemtuzumab

Still Waiting …

impatientNo thyroid tablets for six days now!

The weight should be dropping off!

Except, it isn’t.

I bumped into a passing acquaintance I hadn’t seen for a couple of years yesterday and we exchanged the usual, ‘how are you, so am I’.

I then waved my hands around my large body and apologised for my weight (why?). I seem to be doing that a lot over the last year or so. Embarrassment? Humiliation?

Anyway, I joked, ‘ah, pesky baby weight, lol.’

‘Aw, bless, you have a new baby?’ (I could see her mentally totting up how ancient I must be)

‘Nah, he’s 17 in August.’

‘Oh.’

I know I’m being impatient, but over the last eighteen months of thyroid tablets, I have packed on the weight. I am … massive … and I hate it. Don’t get me wrong, I never want to be skinny. I can’t quite believe I was a size 10 (ok, maybe 12) before The Teenager and I was perfectly happy with my curves and womanly figure. Right now, I’d settle for a 16.

But … this. This is unreal.

I hate mirrors. Mind you, I like mine – thank you Ikea. It’s just everyone else’s I hate. I leave the house thinking, ok, large but ok, turn to the left. Large but ok. Profile? Hmm. Then, like today, I see myself captured on one of those horrible CCTV cameras, waiting patiently to pick up a parcel at the depot. Who is that? And why did I even leave the house?

I’ve always believed it’s the person we are inside that should shine through, but try thinking that when you’re squeezing into fat jeans and a blouse that gives you a triple choc muffin top. It brings me down. I try to ease my shoulders back (not an inconsiderable task, given the size of my stomach) and sail when I walk. Glide. I will own this weight.

Nah. Doesn’t work.

I’ve never been beautiful, so it’s not an anguished cry for a lost nirvana. I just want to be me again. It’s as if my weight has galloped ahead and I don’t recognise myself. Shallow? Quite possibly? But when MS has already take so much from me, it would have been nice if it had left my metabolism alone.

Yet. In the back of my mind, in the depths of my despair, would I ever swap the treatment I had for zero thyroid problems? Not a chance. I’m not ungrateful. I’m just impatient.

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Divided We Fall?

worldI have a serious question.

There’s a lot of us across the world living with MS – some new to it, some ‘old hands’.

Do the people who have been living with MS for a good few years feel somehow separate from all those newly-diagnosed people?

It’s a personal question for me; regular readers of my blog will know that my dad died of MS complications when he was 35: he had Primary Progressive MS.

With that in mind, I didn’t hesitate to have Alemtuzumab treatment when I was diagnosed with highly-active, or rapidly-evolving MS in 2012.

Yet, when I attended MS-oriented events, there seemed to me to be a clear division between those who had benefited from the rapid advance in MS disease modifying drugs and those who had not had the opportunity to take them.

However, I have also met people younger than me with a drastically declined state of health that no amount of disease modifying drugs could halt. Where do they fit in?

Over the years since my diagnosis, I have heard from fellow MSers:

  • You don’t really know what it’s like to have MS.
  • You’ll never suffer the way I do (from a sprightly 70-year old)
  • MS? You don’t know the meaning of it – you’re cured now you have those drugs.

Is this helpful?

We do at least have something in common – the abject terror a diagnosis of MS brings. So why can’t we unite in our fight against this illness rather than comparing ourselves on a scale of 1 – 10?

Why can’t we be happy that significant advances in medication have been made, so that future MSers will enjoy an easier life? Isn’t this something to celebrate?

I will be forever grateful for the treatment I have had. It has given me back valuable years with The Teenager. And I am saddened there are not such a vast range of treatment options for those with a more progressive form of MS.

Yet, if we can unite, and stand up to MS together, no matter what hand it has dealt us, surely we are stronger?

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You Do Not Have To Be Alone With MS

aloneOn the cusp of 2016, this is a post to thank everyone for their wonderful support for me and my blog over the last three years.

You’ve watched me grow from being bullied and sacked simply for having MS, changing career, coping with three courses of Campath, going back to university and most importantly, bringing up The Teenager despite MS.

 

MS can be a lonely, frightening and isolating illness.

It doesn’t have to be.

If you are reading this and you are feeling alone, please reach out. There are fantastic Facebook groups, tweeps on Twitter and blogs you can connect with. It can be a relief to be amongst people who just … understand.

Whether it’s making sense of foot-drop, cog fog, wibbles and wobbles, there’s a lot of us who know exactly what you’re talking about.

Personally, I don’t know where I would have ended up without the help and encouragement I’ve had from other people – my blog has been a lifeline. Every single comment has helped and I can’t begin to thank you all enough.

My wish for 2016?

I don’t want anyone with MS to suffer in silence.

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A Grave Decision

yayIf you choose to have Alemtuzumab treatment as I did, you’ve got a one in three chance of developing Grave’s disease, a thyroid disorder.

I got the illness and yet another insert in my medical file.

It’s fine – when I was rapidly losing weight and feeling like I could take on the world with the excess energy I had, it was sublime.

The severe cartoon-like heart palpitations were another matter however, and were sadly followed with beta-blockers to bring me back to earth with a thud.

Since then, I’ve been on varying doses of thyroid meds to calibrate me back to normal. Up a little, down a little.

I had a consultation with an empathic and lovely endocrinologist today who fortunately has a great insight into Alemtuzumab-induced Grave’s Disease.

I’m to stay on the meds for another six months, but the likelihood is I will have to choose between losing my thyroid or becoming radioactive (for a week).

Hmm. I googled, and wish I hadn’t. One post started, ‘so, you’ve elected to have your throat cut – are you aware of the risks?’

I met The Boss for Emergency Talks tonight (long, sorry work saga) and explained my dilemma.

I took a sip of wine and said, ‘and I’ve looked in to it, you know, if I get the thyroid taken out, I could, like, lose my ability to … shout.’

‘Can you go private? I’ll pay.’

Charming.

I asked him how he was, what with his broken arm, dodgy knee and headaches.

That obviously reminded him and I waited as he popped out a few pills from their blister packs.

‘Well ..’

‘Yes?’

‘You know my dodgy knee?’

‘How can I forget, Boss?’

‘Erm, well, the doctor thinks its, well, um …’

What?’

‘Gout’.

Ah.

‘Isn’t that what older people get?’

If looks could kill …

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Mind The Gap

get well soonSeven weeks post-third course of Campath (Alemtuzumab) and things were looking up.

If you discounted the cold sores, the bonkers fatigue and the two-week long head cold I just couldn’t shift, things were absolutely fine.

I’m back in work (although naturally The Boss would disagree), and I’m back in Uni for my second year of the Master’s.

Mind you, I’m still wrestling with the experimental writing module – my mind whirls off into weird and wonderful stories ( … this is a dot. A lovely dot. A dot that wanted to be a comma, blah blah) rather than concentrating on Virginia Woolf and her pals.

Then disaster struck.

First, The Boss was fiddling with his ladders on the roof of his van last week, slipped on some rain and fell over, breaking his right arm pretty spectacularly. Cue a plaster cast, a very, very sad face and the realisation that, as a building company, we had to come up with a plan and fast.

Second, just as I was holding a drainage pipe in place, I was whacked over the head by the most overwhelming MS super-charged cricket bat that I felt physically sick. I staggered to a pile of insulation sheets and collapsed in a heap.

I panicked. It couldn’t be a relapse but my speech was wonky, my balance was shot and my head was floating somewhere around in the stratosphere.

I left work early, holding back the vertigo and nausea and somehow got home, wondering how best to prepare for the Uni lecture that evening. Answer: not much. Just getting there would be an achievement.

The minute I got out the shower and had wrapped my dressing gown around myself, The Teenager pounced, holding out his laptop;

‘Mum, mum, mum, mum. Have you heard of The Ramones? Have you? Like, listen to this.’

‘Oh, very nice. Lovely dear.’

‘Yeah, great, innit? And this, there’s a weird guy dancing, look.’

‘Oh right. Yes, that is a bit, um, odd.’

‘Hang on, listen to this song, really funny and can I have some money for the cinema and can you drop me off a bit later? I drank all the milk, sorry.’

I have no idea what’s going on.

But I do know one thing – The Teenager wants a ‘Ramones’ t-shirt for Christmas.

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