MY STORY

 

I was diagnosed with Relapsing Remitting Multiple Sclerosis in May 2015 at 31 years old...

 

"Multiple sclerosis (MS) is a condition of the central nervous system, interfering with nerve impulses within the brain, spinal cord and optic nerves. It is characterised by sclerosis a Greek word meaning scars.

These scars occur within the central nervous system and depending on where they develop, manifest into various symptoms.

MS affects over 23,000 in Australia and more than two million diagnosed worldwide. Most people are diagnosed between the ages of 20-40, but it can affect younger and older people too. Roughly three times as many women have MS as men.

There is currently no known cure for MS however there are a number of treatment options available to help manage symptoms and slow progression of the disease." - MS Australia

 

It was a rocky road to my diagnosis and one that took me and my loved ones completely by surprise.

Apart from a little numbness in my hand in my early 20's I really didn't have anything I thought was neurological or this serious. But, what I did have was years of fatigue and bouts of nausea that I could never quite understand.

I'd just started a new job after relocating to Sydney from London. I was working as Production Manager for a swim and activewear label and everything was going along nicely as I began learning the ropes and loving my new position. However, within about a week or two I became nauseous and I just couldn't shift it. Then another week passed I began to feel a little off balance in my walking. I went another few weeks at work not thinking much of it, as all the other times the nausea had subsided. Then I woke at 3am one morning with the most intense migraine-like pounding headache, the worst I'd ever experienced and I started throwing up.  I went to the doctor the next day and he told me I had a migraine and he 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 some more balance and I was finding it hard to walk, plus my eyes were flickering up and down more and more (which I now know as nystagmus).

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. I couldn't even hold down water. So my boyfriend helped me get to another doctor, she changed my pill and ordered blood work. But I still wasn't getting any better.

It wasn't until the 3rd doctor 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 7 days. The neurologist got me straight into St Vincents Hospital here 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 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 brain inflammation.

However after discharge I only lasted a few hours at home and it all started again, I began throwing and I had the most overwhelming intense nausea I have ever experienced in my life. We (my mum, my boyfriend and me) decided to go back to St Vincents Hospital where they new my case. I could hardly get myself out of bed but I knew I had to, 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 "it's most likely MS", I was devastated. I was finding it really hard to see the positives. I had always been such a positive person and all I wanted to do was write out all the positives in my life that I could focus on. But my writing 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 weeks 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, painful and distressing muscle spasms started happening sporadically. I remember one particular day mum took me for a walk in the rehab garden. I was just finding it all so hard, walking had become extremely difficult, my eyes were flickering like crazy, I couldn't see much except a blur, my coordination was going, my strength was going. I just couldn't understand how they couldn't help me, how they couldn't make it better. 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. 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. 

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 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, no strength. I remember hearing the junior doctor say to mum and Ben "I know this is really distressing but she will get better", in my mind I was thinking "I better get better!".

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 and I couldn't walk or co-ordinate my legs so everywhere I went was 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 pretty tiny. That's when I had to start drinking 3 "fat shakes" a day, which is basically fortified chocolate milk for the malnourished, 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, communication problems, cognitive disfunction, nausea, full body muscles spasms, overwhelming fatigue and despair. It was incredibly terrifying because we didn't know how much better I was actually going to get, there was no guarantee. I also had no idea what this illness was, no way of researching at that stage and I had a million questions going round in my head and no way of easing my mind. 

But I am soo lucky I was under such expert care at St Vincents Hospital, and Ben and mum worked like clockwork to be there for me every single day. My specialist put me on a very strong MS drug immediately called Tysabri which has been an absolute lifesaver - I always feel a little stronger after each infusion.

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. 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.

During the relapse I experienced

  • Loss of mobility – couldn’t walk, couldn’t adjust myself at all, not even to lie on my side, at my worst I couldn’t even adjust my own head
  • Nystagmus or flickering eye movements constantly
  • Double vision
  • Blurred vision
  • Muscle weakness in almost every part of my body
  • A tight band around my middle
  • Loss of speech
  • Slurred speech
  • Loss of depth perception
  • Burning sensations on my face
  • Episodic freezing where I couldn’t walk, slur speech, loose arm and leg co-ordination and Nystagmus worsened for 20 seconds at a time, happening at their worst 30 seconds apart ( I suffered from these for about 6-8 months but they have healed now)
  • Nausea
  • Stiffness and heaviness in my body, a feeling as if your being pushed into the ground and your legs are full of lead
  • Spasticity – incredibly stiff ankles 
  • Tingling in my lower half
  • Partial numbness in my forearms and hands + my lower body from my waist down
  • Memory problems
  • No control over emotion
  • Impatience
  • Dizziness
  • Choking
  • Heat intolerance
  • Cold intolerance
  • Fatigue
  • Severe full body muscle spasms

I've now experienced

  • MS hug – tight chest, hard to breath
  • Uncontrollable itching all over my body
  • Balance issues
  • Headaches
  • Sensory issues - stinging sensations, prickling sensations and a feeling as if a small insect is crawling over my feet

After 3 weeks back in hospital I was taken back to rehab and I did very well, my condition seemed to stabilise and get better. I exercised daily to build my strength and soon enough I was walking on my own, talking (with slurring episodes) and using my hands to do things for myself, I could finally wash my own hair and dress myself with some degree of difficulty and a huge amount of determination. None of it was ever easy, especially when your body doesn't want to do what it's ment to, being uncoordinated is so frustrating and the fatigue was absolutely unbelievable. I could have slept for weeks on end. But we all so badly wanted me to get better that determination took over. 

I was between hospital and rehab for a total of 9 weeks and I was too sick to carry on working. But I had a long road to recovery ahead of me and I needed time-out to heal. And cognitively I just wasn't there.

As soon as I got home I did heaps of research about my condition and what I could do to help it. I soon found out that diet and lifestyle changes can significantly impact the disease course and it gave me hope that I could gain back control. Suddenly everything changed in my mind and I could see me leading a relatively normal life again.

I started the OMS recovery program by Professor George Jelinek shortly after getting out of hospital around August 2015, after my mum and I devoured his books. Dr Jelinek has MS himself  (as did his mother) and did heaps of research using his medical knowledge, un-earthing all the other incredible (yet rather neglected by the mainstream) research on MS and diet and lifestyle changes. One of which (in regards to diet) was Dr Roy Swank who was a pioneer in MS research in the 70's. He conducted a 34 year study on a low saturated fat diet which proved to slow relapse and disability rates significantly. 

The OMS programme prescribes a total way of life for MS recovery all backed by research. Changes include - meditation daily, getting enough sunshine and vitamin D daily, dealing with grief, conflict resolution, following a plant based + seafood diet with as little to no saturated fat as possible (no meat or dairy), daily omegas and regular exercise. Along with OMS I also limit gluten and refined sugar.

I'm so happy to say that I've been relapse free since starting OMS nearly 2 years ago, and I keep going from strength to strength with my recovery. Within 6 months of diagnosis and about 4-5 months on OMS my lesions had healed and I've had no more new lesions or relapses since which I feel is a miracle considering where I was. I'm now working part-time and exercising daily as well as socialising and enjoying my life to it's fullest again with very little that holds me back.