Take a chance

I’m starting with an apology and picture of a cute kitten to make things better:

If you’re still here, then I’m still sorry because for those of you who read last week’s maths-based effort and were hoping for something less numbery this week, I’m afraid this one’s back to the figures.

I know, it’s like checking your school timetable and discovering that yes, it is in fact double maths. And not just double maths, but double maths in the insanely hot temporary classrooms being taught by that supply teacher with the breath.

Oh, and there's a bit of science here too.

But it’s had to be this way because I’ve just got the results of a raft of blood tests and I need to get them down in words so I can start to deal with the numbers.

Blood tests tend to be part and parcel of MS and depending on the disease modifying drug you’re on, you may be required to undergo regular monitoring.

This will indicate whether you are at risk of: infections, thyroid damage, liver, kidney and blood problems, heart irregularities, eye damage or this nasty little bastard.

I’m six months into Tecfidera now and aside from a few flushes and a constant runny nose (support forums tell me this is Tec drip) appear to have been okay.

But this is just surface monitoring, the real test is in the thing you can’t see – the numbers found in the red stuff swooshing its way around my veins.

The key thing to look out for with Tec is lymphocyte levels. These are *science alert* a subtype of white blood cell which contain T cells and B cells. In MS, the activation of some of these cells can cause an abnormal immune response against the central nervous system resulting in demyelination - this is the destruction of myelin (the fatty sheath which surrounds and insulates nerve fibres) which causes the symptoms of MS.

Tecfidera is thought to work by dampening down the actions of the T and B cells, therefore inhibiting the immune system and reducing the possibility of relapses.

But the difficulty is, dampen down lymphocytes and the immune system too much and you leave yourself open to the risk of developing the aforementioned nasty little bastard.

Lymphocytes should be anywhere between 1 and 3. Mine started low, at 1.2, and since being on Tec they have gradually dropped. My latest results show them at 0.74, if they drop to 0.5 I will have to stop because 0.5 heralds the start of the danger zone and the gateway to the risk of developing the NLB.

On the other hand, as a disease modifier, Tecfidera’s efficacy is currently rated as good – with relapses dropping by an average of 53% and disability progression slowed down by 38%  
(Note the ‘on average’ – my experience on Tec could be far better, or far worse, then these numbers.)

So what I need to work out is how to reconcile the risk of my dropping lymphocyte levels versus the risk of relapse – while being aware that the average efficacy may not apply to me anyway. Arrrggh.

It really just feels like I’m making quite a leap of faith into a swirling vortex of numbers.

A thought which can be best summed up by this:

:: Take a chance by The Magic Numbers 

5-4-3-2-1

Numbers and me – we're not friends.

I wasn't a fan of maths at school and am now reliving my fear of fractions through my eight-year-old daughter's increasingly complicated maths homework which seems to my rusty brain to be pitched somewhere between Stephen Hawking and Albert Einstein.

And yes, I know we use maths every day and yes, there are numbers everywhere but as I picnic in our local park I don't generally calculate the height of trees from the length of shadow cast. (I'm trying for the life of me to dredge up what this process is called. Gah, can't remember. *Googles* Ah, proportional reasoning. Another fact to instantly forget.)

But you can't avoid the numbers game with MS – which for the purposes of this post I am renaming the Maths Shit.

For a start, there's the odds of developing it – research highlighted by the MS Trust tells me that in the general UK population about 1 in 600 people has MS.

To have developed it, you need to deal with more maths - there are currently 110 genes that have each been found to increase the risk of someone developing MS to a small degree. None of them directly causes the condition itself and someone with MS will have a combination of many of these genes.

The researchers have then calculated that genes contribute just over half (54%) of the risk factors. The remainder would probably be due to environmental factors. (I don't think these environmental factors have anything to do with knowing how to calculate the height of an actual environmental tree.)

Then there's the maths of other people – or the chance of developing MS by relationship to someone with MS:

• Identical twin - 1 in 5
• Non-identical twin - 1 in 22
• Other brothers or sisters - 1 in 37
• Parent - 1 in 67

So I had a 1 in 600 chance of developing a disease which was itself dependent on a combination of 110 genes which in turn was dependent on two different percentages of two different types of risk.

And this convoluted calculation has led to the very frightening prospect of having saddled my daughter with a 1 in 67 chance of developing the same disease.

Although that risk is still dependant on her own combination of genes and personal environmental risk factors, it remains a horrible, horrible mathematical inheritance. And proof, if any was needed, that numbers and me are never going to be friends.

:: Song 5-4-3-2-1 by Manfred Mann

Ps A big thank you for my cuppa on Monday night at group. You are a very kind couple and the next time the drinks are on me.