Category Archives: Symptoms and Treatment

Dec 07 2013
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Symptoms and Treatment

A NICE Setback

AlemtuzumabLast week NICE (The National Institute for Health and Care Excellence) gave their initial verdict on Alemtuzumab (Lemtrada).

They are unconvinced there is enough evidence that it will be ‘cost effective’ for the NHS to offer as a treatment for MS.

What this means is that although it is licensed as a safe and effective medicine for people with MS in the UK (and neurologists can prescribe it), without NICE approval, the NHS is not legally obliged to prescribe it to anyone who could benefit.

On the day I was diagnosed, apart from hearing that I had rapidly-evolving, or highly active MS, all I remember my neurologist saying was that if I had Alemtuzumab, it could potentially halt the disease progression for up to ten years.

At the time, I was having relapse after relapse, each one leaving me weaker than before. I was a mess, physically and mentally. My son was 12 and I feared for both our futures.

And having grown up being aware of my dad’s accelerated MS deterioration and early death from a secondary infection (he was 35), my mind was already made up. I signed up for two infusions, a year apart. I was incredibly fortunate to be in the right place at the right time.

So what’s my verdict? Alemtuzumab has been life-changing. It really did halt my MS in its tracks. I might still have the same symptoms I had before the treatment, but there has been absolutely no progression. No relapses. I still have good days and bad, but I know with certainty that good days will follow the bad.

Before Alemtuzumab, I was never in remission. Life was an endless string of relapses. Since the treatment, I have had the chance to pick up the pieces of my life.

And as for cost-effectiveness, what price a life? Apart from anything else, I now no longer need to contact the MS team on a regular basis. There are no trips to the relapse clinic, no steroids. But most importantly, I can be a real mother again. My son no longer lives in fear and I have the energy (mostly) to be there for him.

(The MS Society will be campaigning for NICE to overturn their decision and a public consultation is open until 9th January 2014)

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Nov 25 2013
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Symptoms and Treatment

Numb And Number

Numb and NumberWe certainly know how to enjoy ourselves in our little household.

Yesterday, after some lovely chicken pie, my big toe went completely numb (I’m not saying the two are connected, but we’re having lamb next Sunday).

Unable to keep this to myself, I nimbly/numbly stumbled into the living room and told The Teenager.

‘I can’t feel my big toe!! See (flick) nothing! Go on, you try.’

‘Mum. You’re weird. If you weren’t my mum, you’d be the kind of person you tell me not to talk to.’

‘Look, try this (finds a drawing pin), you be the neurologist. Just press it on to my toe.’

‘*sigh* Did you feel that?’

‘No! Weird, huh?’

‘Feel that?’

‘That was my ankle. It’s fine. Give me that.’

I’m no stranger to numbness. One of my first symptoms was completely numb feet, making walking a painful and tedious exercise in tentative negotiation, often resulting in ‘hilarious’ trips, foot drop making matters even worse. I was on first-name terms with every pavement in the vicinity.

Since my last relapse, things have calmed down a bit, although my feet still constantly tingle and buzz. In fact, I can’t remember the last time they didn’t. If I could go back to that very last day of ‘normal’ feet, I’d wear 4 6 8 inch Jimmy Choos for 24 hours and dance til dawn. Then I’d box-frame them (using my glue gun, natch) and hang them on the wall.

Numbness is an odd sensation, and to other people it doesn’t even sound like a troubling symptom, but it sure makes life…..interesting. If I hold a book for too long, numb fingers. Waking up in the morning, numb arms. Sit for too long, numb legs. No wonder The Teenager calls me Numb Numb.

But as with most of MS’s weird and wonderful box of tricks, it’s surprising how much I’m used to it now, especially dropping things. I am a past master.

Like the other day when I was in a smart cafe having breakfast. You know, those places that don’t just put your beans on the plate, they serve them in dinky little chrome buckets (why?). You can see where I’m going with this. The thing flew out my hands, I caught it, smiled with relief, then it jumped back out my very loose grip and clattered across the floor. Raised eyebrows from the next table.

The waitress rushed over, ‘Is everything ok?’ It was so tempting to say, ‘pull up a chair love, this may take some time….’

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Nov 07 2013
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Symptoms and Treatment

The Red-Eyed Monster

the red-eyed monsterIf jealousy has green eyes, guilt most definitely has red, judging by the amount of tears I cried on Tuesday night.

The day started innocuously enough. I schlepped to work, planned dinner for later, joked around with the boss. Then blam, thwack.  Whole-body weakness, a brain stuffed with cotton wool and a need to get home pronto.

The boss let me go early and back home blind panic set in. I couldn’t cook dinner. I could barely stand and when I did, I was pin-balling off the walls, so I called my mum for help. She rushed down, but The Teenager was adamant that he didn’t want to sleep overnight at her house (no Sky Sports News).

She stayed for a while instead, giving the cat some chewy treats, cheering us up, admiring The Teenager’s new Nirvana poster and giving me a bit of space to panic some more.

All I wanted to do was go to bed, and not just for a nap. During the day, I sleep when I have to and The Teenager is either out or at school, but the evenings are different. And therein lies the problem and source of my overwhelming guilt. I’m a single parent (violins at the ready) and The Teenager is an only child. It just wouldn’t be fair to abandon him at 6 or 7pm. I know he’s 14, but I grew up with ill parents (my dad and my stepfather) and am keenly aware of the fears this gave me as a child.

So what did I do? MS left me no choice. I crawled into bed at 7pm, crying my eyes out, leaving The Teenager downstairs with his homework and remote control.

Ten hours later I woke up, guilt flooding back. Until I looked at all the tweets I’d been sent while I’d been sleeping. Lovely, supportive tweets from all around the world. I wasn’t going through this alone. So, I stumbled out of bed, woke The Teenager for his paper round and we had a little chat as he struggled to get his waterproof trousers on.

After patting me on the head and telling me he was fine, he launched into a goal-by-goal account of a football match he’d watched with the cat. Then he bashfully admitted he’d read my Twitter feed last night and felt comforted by all the messages of support, and he too felt less alone.

Just before he left for school, he said I was more than welcome to go to sleep early again, he’d just chat to my Twitter friends. Um….

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Oct 26 2013
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Symptoms and Treatment

I’m Not Failing, I’m Sleeping…

sleep tightI had one of those earth-shattering, life-changing  moments of clarity the other day.

I closed my eyes at 10am, just to have a quick cat nap.

Two hours later, I woke up. I was incensed, maddened by the sheer waste of time and looked with dismay at my unaccomplished ‘To Do’ list.

As I stumbled into the kitchen to make a cup of strong coffee, tripping over the cat (she’s tiny but deadly), I stopped in my tracks. MS fatigue. I expect everyone else to take me seriously about how debilitating it can be, how much of a real symptom it is. And yet… I don’t.

Instead, I see it as a major inconvenience, something to be tolerated if I am to get through the day intact. It’s a distraction, holding me back from my real life. Or is it? I take my other MS symptoms seriously and factor them in, so why don’t I do the same with my most significant symptom, fatigue?

Over the last two years, I have railed against the pointlessness of all this sleep. I flounce to my sofa in anger, utterly fed up at yet another hour passing me by with absolutely nothing achieved. This had to change.

Rather than getting angry, I am now going to start respecting this fatigue, just as I accept that nerve pain, foot drop and stumbling are part of my life now. I can’t change it, so I will accord it the same respect. The fatigue is my body’s way of telling me to slow down, my brain needs a rest. I will view it as a valid symptom, not a major annoyance.

I tried out this new way of thinking yesterday. I had some things to do in the morning, and could feel the fatigue creeping up. Back home, my brain shut down. The To Do list was put to one side, I got my duvet out and fell asleep. I woke up feeling better, accepting that this is my life now. I can’t change it, but I can change how I approach it. I can absorb it into my life or I can go on forever feeling angry and a failure.

And you know what? I feel that in some way I have made peace with myself. I’m not failing any more.

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Oct 20 2013
6 Comments
Symptoms and Treatment

What Was I Saying Again?

goldfish‘It’s there, that watchermacallit on the thingiemabob. Next to the dooby-doo.’

This was me yesterday, explaining to The Teenager where an important form he needed for school was.

MS has been having lots of fun with my brain and it’s only getting worse (it’s got absolutely nothing to do with turning 40 of course). I just can’t seem to remember the most simple words.

I’ll pause mid-sentence, sifting through years of education in my mind before finally landing on the word I’m looking for, so happy to have found it that I’ll inappropriately yell out ‘banana! I meant, banana!’. Or some other word that completely escaped me five minutes earlier.

I also make up new words. Like last week when my mum asked me what I had planned that morning. ‘Oh, it’s flab day’, I replied. She sighed and said, ‘oh sweetheart, I know you’re unhappy with your weight, but think positively. Have you tried chick peas?’ I had to tell her that I was indeed unhappy with my weight, but I was actually going for my flu jab.

In my glory days, I prided myself on being able to converse in three languages (four if you count Glasgwegian). Now, I can barely get by with one. Plus, I also have the ignominy of repeating myself, thanks to bizarre short term memory loss. I am in danger of turning into the dinner party guest from hell, the one that’s invited along for a bit of comic relief.

I have visions of Christmas Day twenty years from now, with The Teenager taking his children to one side and gently reminding them to be patient with Granny Stumbling and not to laugh when she can’t remember the punchlines to jokes, or when she asks them for the umpteenth time how they’re doing in school. Just re-fill her sherry glass and hand her a copy of People’s Friend. And under no circumstances are you to bring out Pictionary or Scrabble.

For now, although socially dire, I manage as best I can. In shops, when I can’t remember what I went in for, I’ll look at my watch and dash off, pretending I’m late for some appointment. In restaurants, I’ll point to the menu, as if my mind is on higher things than ordering lunch. And when I’m out with friends, I’ll….hang on, what was I saying again?

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