The Beta Interferon blues.

I’m about to go back on Rebif after a four week trial period of coming off it.

It wouldn’t be the first time I’ve done this, I tend not to take it on holiday (just a hassle) or over Christmas (to give myself a break).

So, have I noticed any changes?

On the negative side, I’ve noticed some extra dizziness and tingling arms and hands. A couple of days ago I woke up with a partially numb right forearm extending into my little finger, which isn’t usual for me.

And that’s it!

Of course I realise that a prolonged period off the meds increases the chance of a relapse etc, so I’m going to start injecting again tonight to see what happens next.

On the positive side (and this is a big one) I’m happier.

Granted, I’ve been on holiday to Florida over the last four weeks which might explain my improved Disneyfied mood, but I haven’t had the usual back to work blues this time.

I can quantify the improved mood as well.

A couple of months before I came off Rebif, my GP asked how I was feeling and handed me a mood questionnaire. The same questionnaire is available on the NHS website. I scored pretty highly: 15 out of 20, I think, which puts me bubbling under ‘severely depressed.’

If I complete the questionnaire now, I score 3 or 4, and I get those for MS related things rather than anything mood related. I might get up a lot in the night, for instance, because of my bladder.

Because my mood has improved, I’ve been eating less and been more energetic. I’m also sleeping better. My wife jokes that she doesn’t know many people who can go on holiday to the States and lose ten pounds, but I did. Ten pounds!! In two weeks!

Among the listed side effects of beta interferon 1a (Rebif and Avonex) is suicidal thoughts and depression, so it will be interesting to see what happens when I resume the meds. I’ll be monitoring my mood score and contacting my MS nurse if my situation changes.

The medication choices have changed in the six years since I was diagnosed, so if the worst comes to the worst I’ll have some research to do.

Anyway, wish me luck. Time to get those syringes ready.

My MS History – Part One

Once somebody tells you, you have MS, you start to put a jigsaw together. You wonder whether that strange tingling sensation you had in your right arm last year had something to do with it, or in my case the vertigo diagnosis from the previous year and the little numb patch between my big toe on my right foot and the others.

It all happened at roughly the same time, but seemingly by stealth as I can’t put an exact time or even a date on it. My old office at work used to look out onto the rolling Derbyshire scenery. In the distance there was a radio mast on top of one of the hills. I remember looking up at that radio mast and hilltop one morning to see two radio masts and hilltops, but weirdly, only when I looked left. Also, when I hammered away at my computer keyboard, I noticed that my fingers felt a bit tingly. ‘RSI?’ I wondered.

I had recently had delivery of a new computer and I had shifted my workspace around and moved my desk from one side of the office to the other. When this sort of thing happens, my employer automatically sends a health and safety person round to assess how you are sitting, whether the new screen you have is causing any eye problems (“Yeah, well I do have this problem with doublevision”), or whether your seat is suitable (“Funny you should say that, but I get this strange electrical tingling sensation down my back and into my thighs when I put my chin to my chest”). The doublevision I put down to eye strain as I had other unexplained problems with my eyes a few years before (this particular jigsaw piece hadn’t dropped into it’s slot at this point).

The health and safety guy, barely into his twenties, was non-plussed. “Maybe ask your GP,” was his suggestion.

“Yeah… maybe I will”

I recounted my recent problems to my brother shortly afterwards at the football. “If you were a TV, I’d take you back to the shop” was his comment. I could see his logic, and I needed to see my GP about something minor anyway – I needed a wart removing from my lip – I could always mention this weird stuff at the end as an aside.

I saw a locum GP. It turned out that the wart was the least of his concerns. He did various tests. I had my reflexes tested, I watched his finger move left to right, I stood on one leg, I touched my nose then his moving finger then my nose and so on. He booked me in for an emergency CT scan at the hospital in the city. I should get an appointment within the fortnight, he said.

He thought everything I was experiencing was connected somehow, but wouldn’t be drawn on what it might be apart from that it could be something pressing on my spinal cord.

“Basically, where my expertise ends, someone else’s begins…” were his words, “take it easy… don’t do anything strenuous… no heavy lifting… look after yourself… be selfish… let others take the strain for a while.”

A GP has never said anything like this to me before. My previous visits had always been met with a “don’t worry about it, it’ll go away” air about them.

I thought of the heavy suitcase that I had to load and lift into the car, ready for our family holiday in a couple of day’s time. “I’m going on holiday at the weekend.” I explained.

“Where are you going?”

“Cornwall.”

“That’s good. They have hospitals down there.”

“You’ve got me worried now,” I laughed . . . no flicker of a smile on his face.

As I left the surgery, I felt the weirdest sensation. Something other-worldly, like I had been given a serious secret assignment.

I had a door with what could be a monster lurking behind it. All I had to do was find the key.