Living with disability is one thing, treating the systems as an ongoing concern is another.
I visit the consultant once a year to discuss any new treatments and medicine that may have surfaced via the research that is being carried out globally. There's rarely anything to discuss in any detail. The condition is so rare I generally come away with little in the way of inspiration or motivation. It's really just about keeping going.
On a recent visit we discussed monitoring the progress of the condition in some more detail. I currently have a short synacthen test to gauge my adrenal function. I'm now looking at having a full MRI scan to monitor brain and spine.
This is probably a good thing in the long term but it fills me with dread.
I remember clearly my brother's first scan about 12 years ago. It was clear and we were all relieved but just 12 months later a new scan revealed all manner of problems. Sure enough Dave's health deteriorated and within a year he was dead.
To further complicate things I am unable to lay flat for any period of time. I'm told it's a problem with my neck and a blocking of the blood supply to my brain. The effect is that I feel giddy and could very well pass out if I don't sit up.
I raised this with the consultant and we looked in to medication or even a full general anaesthetic. I wasn't particularly happy with either but somehow I needed to get through this.
I researched the possibility of an upright MRI scanner. It turns out they do exist. The nearest to me is in Leeds. A hundred miles or so away. I called them. Yup, sure enough they have one and could fit me in within a few days.
Great! No need to lay flat in a tube for 20 minutes full of fear.
Now at this point I would turn my back ordinarily. But I'm lucky. The company that I work for provides private medical insurance via Bupa. A quick glance at the policy reveals that such MRI scans should be covered. I'll give them a ring to see whether they cover this particular scan but it's encouraging none the less.
Private medical insurance is a God send. Without it I'd be a mess just thinking about this scan. I've dreaded the thought of having an MRI scan for years since Dave's experience. It's almost as if just by virtue of the fact I'm having one I'm accepting that the end is nigh.
Bupa's upright MRI scanner finder can be found here http://finder.bupa.co.uk/Hospital/view/177410/leeds_upright_mri_centre