Monday, 31 October 2011

Have I really got it? Really?

Two weeks today and I will be starting the Big A (alemtuzumab).

But suddenly I am actually wondering whether I need it or not. For the past couple of weeks, I've been feeling so well. 

I don't feel tired. I don't feel unsteady. I don't feel a bit weird behind the eyes. I haven't had a spasm for weeks. I don't feel worried about going out on my own in case my balance decides to diminish suddenly. And my skin doesn't feel tingly and numb.

Could the neurologist have made a mistake?? All of a sudden, I had this feeling crawling all over me that it was all a huge error on his part. He'd got it wrong. Those brain scans which showed multiple new lesions were nothing but a lie.

In a fit of hope, I rang my wonderful MS nurse. 

"So, um, I know this might sound like a weird question but, um, do you reckon it's been a mistake?" I asked her hesitating for a split second wondering to myself if this poor woman was going to think she's got a total loon on her hands.

A deathly silence for all of 10 seconds. Count it in your head... it's a long time waiting for an answer which could shatter your dreams.

"I know what you are saying," came the reply in a kind and gentle way, "but your neurologist is truly excellent at his job and it's really unlikely that he would get it wrong."

"Just enjoy feeling well blah blah blah..."

I knew I was being a fool for asking because of course they wouldn't get the diagnoses wrong but the hope that had flooded through me that they were wrong really had started to convince me that this MS was just a dark and horrible nightmare which I was about to wake up from.

So now, I'm back to trying to come to terms with this thing. 

At least the alemtuzumab dream is still there.

Tuesday, 25 October 2011

Wine, tights and spasms

So it is now 20 days until the Big A (alemtuzumab) treatment and I am trying to meet up with as many people as I can because after the treatment I'm going to have to lay pretty low for about six weeks in order to avoid catching any bugs. (Although none of the people I'm saying my temporary farewells to know that saying au revoir is what I'm doing.)

To be honest, I've been avoiding social situations for a while now. Once upon a time, I was out every weekend. People were used to seeing me turning up to work on a Monday, bleary eyed, fuzzy headed and gushing about what an amazing weekend I'd had. Invites to parties were always accepted and few needed to say it was going to be a boozy affair because that was taken as a given.

But then my old friend MS started to make its appearance felt. A glass of wine and suddenly my hand would start to spasm painfully. Clawed and with a mind of its own, the pain would spread up my arm until it hit my shoulder blade.

At home, it was ok - I didn't need to hide it from my husband. But out and about? Well that was a different story.

A couple of times, I found sitting on my hand was the only way to cope with it. A few minutes later and the spasm would pass.

But even though it was just a few minutes, my night was ruined because that few moments reminded me that I have MS.

That I have this vile and hideous disease that I can't control; that I can't do anything about; that makes me stop dreaming and instead makes me wonder how disabled I'm going to get? When will I end up in a wheelchair? When will people stop looking at me like me?

And so the self-pity and the anger sets in.

Once, I was at a wedding and had donned some very attractive 'hold my belly in tights'. I went for a toilet break and there was a queue. Finally it was my turn, so in I went, spent a penny and then attempted to pull up the 15 denier nude tights without laddering them and manoeuvring my post-baby belly back into the fat-busting panel. I won't lie... the situation was tense! More so because there was now some desperate-for-the-loo fellow guest hammering on the door begging for me to hurry up. And as if by magic, with my hand halfway down my tights, MS decided to strike and my arm spasm returned.
I was now trapped in that cubical with a woman desperate to get in outside and me on the inside desperate to get my hand out of its spasm (and my tights). In the end, I gave up. Sat down on the toilet lid and waited for normality to return before pulling up my tights and wiping my eyes from the tears that had suddenly escaped.

So, that's why I've been avoiding social situations because there's only so much sitting on my hand in a night I can take. It's not because I don't like going out anymore. It's not because I don't like getting giggly over a few glasses of wine anymore. It's not because I've turned into a stuck up snob.

It's because I can't show the world that I'm out of control when MS comes out to play. I can't show the world yet and I'm not sure if I ever can.

That's why I'm pinning my hopes - all my hopes - on the Big A and praying that it works.

Friday, 21 October 2011

What is alemtuzumab?

I thought I better give a little information about alemtuzumab so instead of giving you what I (probably inaccurately) think it is, here is the MS Trust info on it (and I've copied a bit below if you can't be bothered opening the fact sheet!)

1.  What is alemtuzumab? 
Alemtuzumab is an experimental drug treatment that is currently being tested in clinical trials for people with relapsing remitting MS. Although alemtuzumab is not currently licensed for use in MS, it is licensed for use in B-cell chronic lymphocytic leukaemia, a type of cancer. 

2.  How does alemtuzumab work? 
Alemtuzumab is a humanised monoclonal antibody. Antibodies are proteins produced by the immune system to fight foreign substances, such as
infections. Monoclonal antibodies can be produced in large quantities in cell culture in a laboratory and can be designed to bind to proteins on the body’s
normal cells, altering the immune response.
Alemtuzumab acts by killing T-cells which form part of the immune system.  In multiple sclerosis T-cells mistakenly attack myelin and cause the inflammation
seen on MRI scans. It is thought that the T-cells that regenerate following treatment with alemtuzumab do not include the subset which destroys myelin.

I will be getting one course of treatment (over five days) in 24 days time. I will then get my next dose a year later over three days and I may have a third dose 12 months after that.
From what I can gather, the treatment can make you feel tired, you get a rash and you can see a temporary re-emergence of MS symptoms you may have already suffered. And because the treatment destroys your T-cells, for the six to eight weeks it takes your body to regrow better behaved T-cells, your immunity is weak so you are advised to stay away from people with colds, flu and any other contagious illnesses.

Thursday, 20 October 2011

To begin at the beginning

Hi, I am Sian and I have Multiple Sclerosis - fondly known as, MS.
I never thought I would ever have to say that.
Actually I still rarely say it.
Nine people in total know I have MS. Me, my husband, my mum, my dad, my neurologist, my MS nurse and a couple of friends and colleagues. Oh 10 if you count my dentist because last time I went for a check up he asked me if there were any medical conditions since my last visit. The question took me by surprise and it was the first time I had admitted it outside the circle of people who already know.
And I should confess, my name isn't actually Sian. But until I finally get the courage to admit it to other people that's how it is going to stay. 
Those with MS will probably think I'm a total idiot for being so coy about having it. But I'm not ready to answer the questions of the people I tell. Or, more truthfully, I don't want opinions to change of me from my nearest and dearest... and from those who don't think much of me. Yes, I know I am probably being a bit of a fool but I'm still trying to get to grips with this thing and I have serious moments of darkness about it at times.
So I've started this blog because I am about to undergo a treatment called alemtuzumab (also known as Campath and Lemtrada) and apart from this excellent and personal account from David Sturt on how he coped with having it, there hasn't been much patient point of view I can find on it - lots of medical information but not how it actually feels.
I am nervous but I am so hopeful about it. 
So in 25 days time I am going to be at University Hospital Wales in Cardiff getting my first dose. Bring it on.