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Thursday, 27 June 2013

January 24th 2013: Diagnosis Number 2 - MSA.... Multiple System Atrophy

By the 3rd week of the new year we felt like we'd already spent most of it at the hospital and that we'd been hit with as much medical mayhem as was humanly possible in that space of time. On that Thursday morning when we went to meet the Senior Neurologist who had been following up Suzie's case (before the more recent breathing crisis had arisen) we really weren't expecting anything new to be thrown into the equation. The Neurologist had studied all of the tests results that Suzie's notes had accumulated during the previous 12 months. She asked us numerous questions and carefully observed Suzie attempting to carry out the various tasks and manoeuvres that were asked of her. After her thorough examination of Suzie she uttered those three words that, from that moment on, would come to dominate every part of our lives - Multiple System Atrophy......
I'd heard of this illness some months previously and I remember looking it up on Google. After reading all about the symptoms and prognosis I'd very quickly decided that this was NOT what I wanted Suzie's illness to be. I found a couple of symptoms that didn't fit with Suzie's and very quickly put it to the back of my mind. I'd thought that maybe I should mention it to the Neurologist when we next saw her but, with all the trauma of Suzie's recent hospital admission and the subsequent cancer diagnosis, it had gone out of my mind. Suddenly I was hearing these words again, only this time they were being used in the context of a fairly confident diagnosis. I can't begin to describe the impact they had on me. I hadn't shared my concerns with Suzie when I'd first looked up MSA so she was hearing about this disease for the first time and didn't know what to make of it.
It was explained to us that MSA is a rare degenerative neurological disease caused by progressive loss of cell function in the brain and it produces a variety of motor function failures. It causes symptoms similar to Parkinson's Disease but it's much more rapidly progressive and usually unresponsive to treatment.
It seemed that there was absolutely no connection between this illness and the recently diagnosed Primary Peritoneal Cancer. We felt like we'd been dealt a double blow. Suzie had been diagnosed with not one but two totally unrelated yet life changing and life limiting diseases - and both in the space of 3 days.
Throughout an agonising 12 months of not knowing why Suzie was becoming so poorly we had been constantly praying for answers and for clarity.... and those prayers had now been answered. The answers weren't what we'd wanted, and the clarity only served to confirm that Suzie's symptoms weren't going to get better. We felt utterly downcast, deflated and downright scared. What was our future going to look like? How were we going to get through this?
It's times like this that I don't know how I would cope without my faith in a loving and gracious God. He had allowed this to happen. We didn't know why, but we didn't need to. All we needed to know was that He had planned it all for a purpose and that He would be with us through it all. This we believed.
That gave us immense strength, but it didn't take away the fact that we were still ordinary people with normal feelings. Throughout the coming months we would experience tears and fears, raw and painful emotions and utter desolation and devastation on a scale we would never have thought possible.