My Story

It was a very sudden and rocky road to my diagnosis — one that took me and my loved ones completely by surprise. Apart from a little numbness in my hand in my early twenties and bouts of nausea I could never quite understand, I hadn’t experienced anything I thought was neurological or this serious. But I had lived with years of fatigue that seemed to slowly worsen in the year leading up to my diagnosis.

Then a few months before, I had a fall while out running. I smashed my chin on the pavement, grazed my knees badly, and my right hand stayed swollen for weeks afterwards. I remember limping home, half crying and bleeding, thinking, what just happened? I remember saying to Ben, “I feel like this could be the beginning of something more sinister.”

A few months after this and just weeks prior to when my attack began I'd started a new job but within about a week or two I became nauseous and I just couldn't shift it. Then another week passed and I began to feel a little off balance in my walking, and one day when I was sitting at my computer my eyes went fuzzy then refocused again similar to how a camera lens would do when trying to focus. I was also running to the bathroom so constantly that my co-worker said in front of our whole team and my bosses "wow!, you pee a lot!".  At the time I just put it down to stress as bladders can do these things.

I went another few weeks at work not thinking much of it, then I woke at 3am one morning with the most intense migraine-like pounding headache, the worst I'd ever experienced, and I began throwing up.  I went to the doctor the next day and he told me I had a migraine and gave me anti-nausea and anti-vertigo pills. After a few days of taking them nothing seemed to change but by this time I'd lost more balance and was finding it hard to walk, plus my eyes were flickering up and down more and more which I now know as Nystagmus. I was still trying my hardest to work on my laptop from home but it was becoming harder and harder.

I called the same doctor back and he told me to double the dose of the pills he'd given me, but I was still deteriorating. It was when I couldn't even hold down water we got really concerned. So Ben helped me get to another doctor as my balance and vision had worsened that I needed support to get there, she changed my pill and ordered blood work, but I still wasn't getting any better.

It wasn't until the third doctor I visited who saw the signs and thankfully referred me to a neurologist and ordered an MRI within minutes of seeing him. This was all within about 4-5 days, from the intense head pain to the MRI. By the time I saw the neurologist I was in tears trying to describe my symptoms, he instantly got me staight into St Vincents Hospital in Sydney, and by that stage I was in a wheelchair and starting to slur my speech. They gave me intravenous steroids for 3 days and did a spinal tap and I got much better, I was walking and talking clearly, my eyes had calmed a lot and I felt almost back on track. During this time they told me that MS was on the cards but they wouldn't know until I relapsed, so for now it could be one isolated case of inflammation on my brain, which I believe is known as Clinically Isolated Syndrome.

However after they discharged me I only lasted a few hours at home and it all started again, I began throwing up and had the most overwhelming intense nausea I have ever experienced. We (my mum, Ben and me) decided to go back to St Vincents Hospital where they knew my case. I could hardly get myself out of bed but I knew I had to and I spent the whole 30 minute taxi ride with my head in a sick bowl. As soon as I got to A & E they wrapped a heated blanket around me, gave me fluids and ordered more tests and a full MRI. It was all a bit hazy, but I remember being so tired and falling asleep a lot even when doctors were trying to talk to me. 

They admitted me to hospital and prescribed oral steroids and fluids and I seemed to stabilise. But they still couldn't tell me what was wrong. In my mind I thought that this incident was technically another relapse - so does this mean I have MS?? It was a tough few weeks waiting as my body was haywire and I had no idea what was going on. 

Then the head of neurology at St Vincents payed me a visit one Saturday morning. He stood at the end of my hospital bed and told me that "it's most likely MS", it was devastating. I was finding it really hard to see the positives and all I wanted to do was write out all the positives in my life that I could focus on but my co-ordination, strength and vision had gotten so bad I could hardly write, let alone see what I had written. It was all extremely frustrating, but little did I know it was about to get way worse.

After a few week or two I was admitted to the rehabilitation unit to work on my strength and walking. However as they reduced me off the oral steroids I got significantly worse. It was a bizarre feeling because we were all expecting me to get better, but every day I woke up I was actually getting worse, bit by bit. Just getting out of bed was exhausting, I was dropping things a lot, and painful and distressing muscle spasms started happening sporadically.

I remember one particular day mum took me for a walk in the rehab garden and I was finding it all so hard, walking had become extremely difficult, my eyes were flickering like crazy so I couldn't see much except a blur, my coordination was going, my strength was going and it all hit me emotionally. I just couldn't understand how the Dr's couldn't help me, how they couldn't make it better and I just wanted it all to be over, I was done. My mum called the doctors in and they could see I was distressed and that things had worsened and they transferred me straight back to hospital.

Within a day or two I had lost the ability to walk, talk and use my hands. My whole body was incredibly weak, I would just flop and flail about if I could get the strength to move. I remember one day the doctors came in and told me to get out of bed, I was thinking ha! you'll be lucky!!, but they insisted. I had Ben on one side and mum on the other and they had to pull me up into sitting position and hold me there, but my whole body just flopped over, my head hung over, I had no control, and no strength. I remember hearing the junior doctor say to mum and Ben "I know this is really distressing but she will get better", as much as that was a relief to hear as no Dr had reassured us at that point, in my mind I was thinking "I better get better!!!", not to mention how humiliating it was.

During that time Ben and mum had to feed me and I had to be showered by the nurses. I couldn't wash myself or my own hair let alone apply make-up or put my hair up to feel better and I couldn't walk or co-ordinate my legs so everywhere I went was assisted in a wheelchair. I remember Ben and mum making me try and brush my teeth but my co-ordination was so bad that any attempt at the back and forwards motion just went haywire. The toothbrush would slam into my gums. But I couldn't tell them how frustrating this all was because my speech was so bad they couldn't understand me.

I remember passing up meals because it was so difficult - the whole process of it. During that time I lost 10kg and went down to 43kg, at 5 foot 8 inches tall I was tiny. That's when I was prescribed 3 "fat shakes" a day to make me gain weight, which is basically fortified chocolate milk for the malnourished, the elderly or people like me. I was already on thickened liquids and mashed food because I was choking so much.

My days were a haze of disability challenges, communication problems, cognitive dysfunction, nausea, full body muscles spasms, overwhelming fatigue, tears and despair. It was all incredibly terrifying because we didn't know how much better I was actually going to get, there was no guarantee of any kind of recovery and absolutely no reassurance from my Dr's. I also had no idea what this illness was, no way of researching at that stage and I had a million questions going round my mind and no way of easing my mind. 

But I'm so grateful I was under such expert care at St Vincents Hospital, and Ben, my mum and later Bens mum, worked like clockwork to be there for me every single day. My specialist put me on a strong MS drug immediately at that point called Tysabri which has been an absolute lifesaver and it slowly started to tame the attack on my brain so I could recover.

It turns out I had a very large amount of inflammation at the junction of my brainstem and my brain so nearly all the signalling from my brain to my body was being disrupted with inflammation, plus a few other lesions in my brain. On the scan you can literally see only about 2 mil of clear area around it on one side, which explains why I was in such a bad way.