Today I had an appointment with my neurologist, who gave me the results of my recent MRI scan. Compared to my scan of March 2009, it showed a decrease in both the number and the size of the lesions in my brain.

This is A Good Thing: it means my relapse rate has been stalled, and my poor beleaguered body has been able to start repairing some of the myelin damage caused by MS.

How much of this is due to the Tysabri infusions I’ve been on for the last two years, and how much is due to me finally acknowledging that the day job with its horrendous commute was no longer sustainable, I’ll probably never know. Bit of both, most likely.

Since I gave up work I’ve been able to get the rest I need, and be kinder to myself. That means on a shitty day, if I don’t get out of bed until 11am, so be it. On good days I’m up at 7:30. Most days it’s somewhere in between. Either way, these results confirm that quitting my job and changing my treatment regimen were the right things to do.

One small winged insect in the ointment: Tysabri (natalizumab) has an immuno-suppressant effect, and some immuno-compromised people, like MS patients and transplant recipients given anti-rejection drugs, have gone on to develop PML, or progressive multifocal leukoencephalopathy, which is often fatal.

The science bit: PML is triggered by the JC virus, which is widespread in the general population, lying latent in the gastrointestinal tract. In an immuno-compromised patient it can “reactivate” and trigger PML, because JCV can cross the blood-brain barrier and directly infect (and destroy) the oligodendrocytes which protect the myelin sheath around the nerve-cells’ axons in the central nervous system – that’s your brain and spinal cord.

I was blood-tested last week to see if I’ve been exposed to JCV. The general risk of developing PML is about 1 in 1,000; if I’ve been exposed, that rises to about 1 in 400. Given that somewhere north of 70% of the population will have been exposed to it (usually in childhood) this, as you can imagine, gives me some food for thought.

I’ve had two very stable, relapse-free years with Tysabri. Back in 2009, when it became apparent that the beta-interferon therapy was no longer working, I looked at the risks, weighed up the benefits, and decided Tysabri was the best treatment option for me and my highly-active at the time MS. I still think that is the case, but when the blood-test results come in, if my risk profile changes, I am going to have to think through my choices once more and see if I’m still comfortable with it.

UPDATE:

I got the result of my blood test and I am negative for JCV. This means my chances of developing PML as a result of my Tysabri infusions have dropped to around 1 in 7,000. I think that deserves a woot, don’t you? WOOT!

Got my third Tysabri treatment on Wednesday, and I’m not dead.  So far, so good.

I feel more alert, better able to concentrate, without that awful grey mental fog.  I’ve been able to finish overhauling my website, achieving more in the last fortnight than I’d managed in the previous four months.  It’s good not to feel like a vegetable any more.

I’ve also been able to devote some time to my novel ‘Songs of the Earth’.  It’s at the final edit stage now, and will shortly be hitting some agents’ desks.  Wish me luck.

Alas, the time has come.

My balance problems have got to the point where Rob is terrified to take me pillion on the bike, and I am so leery about getting on and off that I have decided, with great reluctance, to hang up my lid.

I’ve always loved bikes, ever since I saw a picture of the JPS Norton and thought “Ooh, shiny…”  Meeting Rob and his beloved Exup made the bug bite hard.  I wanted a bike of my own, had it all picked out, and decided I’d take my bike test.

Rob, naturally, was extremely worried but incredibly supportive, and took me pillion a few times on the Exup to get used to the idea.  I started giggling dementedly at the first swoopy bend and didn’t stop for the remainder of the journey.  I loved it.  I wanted to spread out my arms Titanic-style and whoop with delight.  It’s true – only bikers understand why dogs love to stick their heads out of car windows.

Lid, gloves, boots and jacket followed.  The Exup was not an ideal pillion machine, so I bought us a brand new Yamaha XJR1300.  In black, natch – the right and proper colour for a motorcycle.  Especially a big old air-cooled musclebike like the XJR.  And I loved that too, even if I couldn’t get it off the stand by myself.  We went to Holy Island on it, and up to Melrose, and made plans to maybe go down to the MotoGP at Donington, or visit my brother.

Those plans quickly got derailed.  Whenever we had the time to go out, the weather was foul.  Whenever I had the inclination to book a CBT, there were other things to spend the money on, or I was ill.  Before we knew it 18 months had passed and we found ourselves with a bike with only a thousand miles on it, that hadn’t turned a wheel in over a year.

Uh-oh.  This was not a good sign.  With heavy hearts, we part-exed the bikes in against a nice sensible car.  Don’t get me wrong, it’s a lovely car and plenty fun to drive, but I miss gearing up for a ride.  I miss earplugs and helmet hair and baked flies on my visor, the feel of the bike’s back end squatting under acceleration and the wind tugging at my jacket.  It was the closest thing to flying I have ever experienced.

/me sobs.

September 2004 and my first relapse of any significance.  I already had some loss of sensation in my fingertips, but it was rather surprising to be soaping myself in the shower and discovering I couldn’t feel the sponge pretty much anywhere from my boobs down.

Hmm.  Well, it wasn’t anything I hadn’t expected, so I got on with my life as best I could.  A week passed, and I got used to feeling superficially numb over the major part of my body.  After twelve weeks, the novelty kinda wore off a bit.

My consultant said steroids were the order of the day, so in December 2004 I had three lots of IV methylprednisolone.  Ellie’s top tip: make sure you bring plenty of boiled sweets.  Methylpred. leaves a *foul* taste in your mouth.  Six weeks of a steadily decreasing dose of oral steroids followed, and by April 2005 I was stable enough to begin beta-interferon therapy.

It’s one of the idiosyncrasies of this disease that you can pretty much choose which of the four common DMDs (disease modifying drugs) you take.  I opted for Avonex.  It was an intramuscular injection, so quite a big needle, but it was only once a week.

Once a week for three years.  After the whole “Hey, I’m injecting myself – how cool is that?” wore off, I found myself struggling with the injections.  I resented the boxes of syringes in the fridge next to the tomatoes and the milk.  I resented having to hurt myself and make myself bleed for the sake of ‘treatment’.  I resented the flu-ey side effects that were supposed to fade after about twelve weeks but which continued to make me feel like shit after every injection unless I swallowed a couple of ibuprofen.

Maybe I wasn’t quite as Zen about this as I thought I was, and I was really resenting my MS.

2004. It started with a bout of double vision, headaches and falling over that could not be attributed to alcohol, or needing new specs.  My GP sent me to an ophthalmologist at the Royal Victoria Infirmary, who ran a battery of tests involving flashing lights and buttons to click.  He then pronounced my eyes perfectly healthy, so I should probably not delve into it too much in case of “consequences”.  Pat me on the head, run along now…

I asked to see a neurologist, and was sufficiently concerned to pay for it.  By the power of the private sector and the Nuffield’s own MRI suite, I was consulted, prodded and MRIed in one sitting within 48 hours of requesting the appointment.  Woo-hoo.  The consultant tried to break it to me gently that there was some kind of imflammatory condition going on, and I looked him in the eye and said, “It’s MS, isn’t it?”

“What makes you say that?”

“My MD’s wife was diagnosed 18 months ago with almost the same symptoms.”

“Oh.  Well. Yes, that’s what it’s looking like but we’ll need to see the MRI to be sure.”

He saw the MRI.  He was sure.

Referral to an MS specialist back on the dear old NHS followed, and a chest X-ray to elminate sarcoidosis, and a lumbar puncture to confirm the MS.  There is no definitive test for MS you see; it’s not like you can take a swab and culture it up and then look at the furry blobs under the microscope and say yes, that’s MS.  But if you’ve got white spots on your MRI and then they find oligoclonal bands in your cerebrospinal fluid, it’s a pretty strong indicator.

So there it was.  I had relapsing-remitting MS.  Not a classic presentation, apparently, but then I am renowned for doing things the hard way.

MS.  Scary, huh?  Actually, no.  It frustrates me, limits me, makes me insanely angry, weepy, tired and clumsy in varying degrees, but it doesn’t scare me.  Maybe it should, since it could potentially get quite grim, but I invite you, gentle reader, to note the “could” and the “potentially” in this sentence.

I don’t know what’s going to happen.  No-one does with this disease.  I could talk in percentages and trends but the simple fact is I don’t know where it’s taking me.  Some people would find that kind of uncertainty alarming, but if I let myself get worried about every uncertainty in my life, I’d never get out of bed.  Whilst that idea has its attractions, the facts remain that I have a job, bills to pay, novels to write and friends to see and I can’t do any of that with the duvet pulled over my head in case the sky falls in.

Frankly, if the sky’s going to fall in there is nothing anyone can do about it so why worry?  It’s just wasting energy that could be more profitably spent working out what went wrong with Chapter 34.