The Trevinator Strikes Again

Last week I went for an MRI with dye. This was partly because my MS had been pretty active between October 2012 and May 2013 having had three relapses. At least two of these were considered by my Consultant to be ‘disabling’ as I’m still feeling some impact from them. This means that Tysabri, a second line treatment may be an option for me. I’ve already had the blood test to check for the JC virus (has the potential to cause some nasty side effects if your on Tysabri) and the nice people in Denmark who my blood was sent to have advised that I’m negative. This makes the decision much easier should it be an option and that all depends on the results of last weeks MRI.

I’m good with MRI’s – I have no issues with claustrophobia or the noise. I’m one of those annoying people who has the ability to sleep through pretty much all of the process despite the fact it sounds like people are throwing hammers at the tube and drilling next to my head. The first five minutes are always the worst when all of a sudden my mouth goes dry and I have a desperate urge to cough. The strain of not moving normally causes my eyes to water and I’m sure the nurse/radiologist then thinks I am crying as there always seems to be a lot of arm rubbing and ‘didn’t you do well!’ while all I can think is ‘did i?’ as I’ve slept through most of the process.

Last week was different for me as I’d never had a scan with dye before. At what should have been half way through the process I was taken out of the scanner so that I could have dye injected into a vein in my inner arm. Still in the padded contraption that stops you being able to move your head I patiently waited the five minutes or so before they could commence the second set of scans. Once back inside I’m told it will take around twenty minutes and I immediately go back to sleep. It isn’t a deep sleep of course, I’m always vaguely aware of a voice telling me when the next scan is being performed. This time the machine seems quieter though and at the end of the first scan the machine is silent as is the voice from the control room. This doesn’t bother me, I continue to doze. Eventually a voice advises me that there is a problem with the machine and they are going to have to remove me while it is restarted.

Eventually the MRI is fixed, ‘the husband’ who is patiently waiting outside for me has been informed that there is a problem and calculates that it was probably down for around twenty minutes. I’m not sure to be honest as I slept through this, – it’s not as if you can read a magazine easily with your head encased in weird pads! I tell the nurse not to worry who apologises profusely when were finally done. I tell her that something similar happened at my last MRI in a different hospital. “It’s you” she says “you’re a jinx!”, we laugh, ‘the husband’ agrees and line of people waiting scowl in my direction.

At my previous MRI I hadn’t even got into the machine before things went wrong. I was on the bed, earplugs in and head encased about to head into the big metal tube when the lights dim to a low level, the whirring of machinery stops and all is silent except for the panicky voice of the nurse. IT people are called and I return to the waiting area grateful that I had worn my planned MRI outfit (no metal) and am not sat in a hospital gown with my jeans neatly folded on my lap like the man next to me. Fifteen minutes later a switch has been thrown and we’re back up and running – apparently fuses are as easy to blow with these things as they are by having too many of your kitchen appliances on at once. But what if it isn’t an IT problem or a blown fuse? Remember when I said I used to think the tingling in my hand could be the beginnings of a super power forming (I Am Lightning Girl) ? What if I am in fact something else entirely? An evil mastermind without the mastermind bit or perhaps a human/robot sent back from the future. I could be the Trevinator – Destroyer of MRIs…

Image used courtesy of WolfWings via Wikipedia

T Is For….. Terminator?

Last Thursday, supervised by my MS Specialist Nurse I injected myself with a Disease Modifying Drug for the first time. Hopefully, fingers crossed, touch wood and all those other superstitions I wouldn’t normally believe in, it will alter the course of my MS. If all goes well it will reduce the number of relapses I have by 33.33333333333333 (okay that’s enough of that!) percent, lessen the impact of any relapses and thus lessen any disability caused.

My nurse of course had to talk me through lots of things that he legally had to tell me. Then we are on to the all important demonstration. However, from the moment he switched on the demo device I became distracted. There on the screen it said T8 and all I could think was Terminator. In the first movie Arnold Swartzenegar played a T-800. I immediately slip into a fantasy world and start to ponder the possibility that my RebiSmart could be a very early creation by Cyberdyne, a tiny device created to help people but that will turn against us. Dazed by my shocking realisation I subtly check the manufacturers name whist administering a fake injection onto a synthetic patch of skin. I am relieved to see the name Merck Serono, not Cyberdyne (nor is it a subsidiary of the latter, I’ve checked – you know, just in case fantasy has become reality).

Back in the real world, my nurse explains that the T is for Titration and that my own RebiSmart will work its way down from T12 to nothing whilst it slowly increases my dosage. After my nurse finished programming my device the time had come and I injected myself for the first time. The process – switching on, loading needle, injecting leg, ejecting needle, turning off – takes a minute, maybe 2. It was all a bit underwhelming – in a good way of course. I could barely feel the injection – just a slight sting really. Then it was time for me to go home and wait for any side effects that might occur. I was prepared for all the possibilities – the flu-like symptoms, aches, stiffness, insomnia, upset stomach, skin sight reactions and the dreaded fatigue.

But I, little miss positive, had made a decision a few weeks ago. I was under the impression that the general feeling from people might be that I was bound to suffer with the side effects, particularly from people who had experienced problems on DMDs. Being stubborn, I therefore chose not to have side effects – simple right? I read somewhere that people who approach treatments for illnesses with a positive attitude do better. So was my decision just deluded thinking?

It’s early days and I can’t say that I’ve been entirely side effect free but I think I’m winning the battle. A headache for a couple of hours is easily manageable with painkillers. The faint red marks which have appeared two days after the first two injections is a great excuse to moisturise with pure Aloe Vera gel. That’s it, so if that’s all the negative stuff that Rebif has to throw at me then that’s fine – I can deal with that. Because I hope that my RebiSmart is going to be a Terminator of sorts. I know it can’t cure me, but if it can keep the disease at bay then it’s got to be worth it. Only time will tell. One thing I do know – everyone’s injection device deserves a name. What better name for mine than Arnie – hasta la vista baby