Delaying treatment: When to start MS medication?

This is a tough entry to write, one I have been avoiding.

I found the decision a simple one to make, and to date I have not doubted it. But others, some very dear to me, do.

In Australia, treatment for multiple sclerosis is recommended to begin after the second demyelinating episode. One episode is defined as a first demyelinating episode (FDE) and the patient in question is diagnosed with Clinically Isolated Syndrome (CIS).

For all intents and purposes, a CIS diagnosis puts one in limbo. It is something akin to the confirmed miracle and subsequent beatification in the Catholic Church – it is the first hoop you have to jump through on the way to sainthood (or multiple sclerosis, in my case).

I have had only one confirmed episode – ascending bilateral parasthesia, from the soles of my feet to my abdomen. I couldn’t miss it.

But my medical history is worryingly full of unexplained complaints that may very well have been earlier, less violent, episodes. Repeated instances of prolonged strange sensations in my limbs that would push me to tears and make me question my sanity. Debilitating fatigue for no good reason. And that emergency trip to the ophthalmologist with severe eye pain and a suspected detached retina.

And so my neurologist made the offer, which I hear is given to all patients faced with the CIS diagnosis.

Redefine a previous episode as my FDE, jump through the required hoop (a second confirmed demyelinating episode) with this episode, and begin treatment for multiple sclerosis.

It is an attractive offer.

But it is also terrifying. It is an admission of defeat. It is reactive and not a little panic-stricken. And to be frank, outright depressing.

I’m not eager to sign up for a pill that requires hospital observation the first time I take it. Nor am I willing to learn how to self-inject myself on a daily basis just yet.

The breathing space I have between now and my next event, whether that be six months or six years, is comforting.

There is some evidence to suggest that some treatments begun after a FDE prolong the time between the next episode. There is evidence to suggest that other treatments may reduce the intensity of subsequent episodes.

But there is no evidence to suggest that any available treatment – whether taken now or later – prevents a second episode.

And so I will take my breathing space.

I am getting on with things, so to speak. And I am looking after my health. I’ve dramatically reduced alcohol and I’ve increased my exercise (although there is more to do in that front).

And I’ve joined the PreVANZ trial… Which I have no doubt is doing wonders for my psychological state, even if it turns out I am merely taking a placebo.

I don’t think I am in denial, although of course someone in denial is not able to make that call. But I have discussed this choice with every medical professional I have seen in the last five months (and believe me, there have been a lot of them), and the general consensus is my approach is rational, reasonable and proactive, and perhaps most importantly, in line with the relevant guidelines.

So yes, I know some of my nearest and dearest don’t agree with me (and may very well be reading this). I hope this is explanation enough as to my choice to forgo the option of starting treatment immediately.

As to what choice I will make after my likely future second episode (my unwanted canonisation into the world of multiple sclerosis)… Bring on the treatment drugs.

One comment

  1. Sorry to hear you are in limbo. If you do decide to try and treat now Copaxone is made up of only Amino Acids which is already present in your body. I’m a long time MS’er. You may have long distances between relapses and some only have one. Prayers for only one. 🙂

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