Joining a trial: Delaying multiple sclerosis?

So, I haven’t posted in a while. I’ve been feeling (relatively) fit and normal… and, well, that always helps with the denial. But over the last two weeks I’ve felt the warning signs, the inexplicable sensations creeping up my arms and feet that no healthy person ever feels. Like ice water poured down the insides of my skin.

And so I am  back, writing a post I meant to write a month ago.

I have only had one episode, my first demyelinating event (FDE). Technically, the medical profession tells me, I don’t have MS. But I am overseen by an MS neurologist in the MS wing of a hospital and asked to join a trial exploring whether vitamin D can prevent (or delay) MS. So quite frankly that definition means nothing to me.

I should note that the insurance world already defines me as a person with MS – I was declined income protection on the basis of my FDE. Ha. When the angst and anger I have towards that particular issue focuses into some kind of constructive determination I will blog about it…

But back to the point of this post. In Australia, treatment is not standard practice until the second event and/or a second MRI that indicates new lesions. That feels counter-intuitive, and I admit to being desperate to start treatment, desperate to do something productive, with whatever time I have left to me before my next episode.

My chance came in the form of the PrevANZ trial, which explores the impact of vitamin D on those who have experienced their FDE. You can check it out here.

Essentially, I take an unmarked pill everyday. It could be 1000, 5000 or 10,000 units of vitamin D, or it could be a placebo. It is a double-blind trial – I have no idea what I am taking, nor does my neurologist. It felt strange the first few weeks, taking an unknown pill. But like anything else done often enough, it has become routine.

Of course, joining the trial has benefits for me. I am closely monitored by a team of doctors, monitored more closely than if I were just another FDE patient let back out into the world to fall ill again if and when my body chooses. Which is a comfort to me. A key point to note is that I get kicked out of the trial if I fall sick again, and my treatment will begin.

Results from the trial aren’t expected until 2017 – too late for me (unless it turns out that vitamin D does have a demonstrable benefit and I happen to be taking the ideal dose) and likely anyone reading this blog. But the results will help others, as the trial will establish whether vitamin D supplementation can prevent (or delay) a diagnosis of MS following an FDE event. And that is the best – and the only – contribution I can make.

 

2 comments

  1. Hi
    Thank you for telling me about this. I think I understand the hesitation about that moment of telling. It’s the risk of incomprehension, or the opposite – a kind of over-comprehension, and then having to carry the baggage of others as you become the means by which they start to work out a wide range of matters to do with themselves.

    I can hear your voice in your writing: strong, smart, clear, honest, willing to be amused. I’m sure this will do good for many people.

    I’m so glad you have made it easier for me to understand what you are going through, and I want you always to tell me what i can do to help.

    May

    Liked by 1 person

Leave a reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s