I first noticed the weakness in my right arm in 2015. Neurologists did tests and thought the problem came from my spine and I even went to see a back surgeon who then sent me back to neurology. After many more tests I was told I had motor neurone disease and had between 6 months…
My Myositis story began around Christmas of 2019, when I was 37 years old. I was visiting my in-laws in Bega, and we were surrounded by bushfire smoke. For the first time ever I struggled to walk from the car to the shops without sitting down. I put it down to the smoke but my…
Looking back , I now realise when it was that I first noticed the symptoms of what turned out to be the start of Myositis. In 1995, I started to find it difficult to walk up the ramp leading to the railway station. By the time I reached the top my legs had begun to…
Patient S – My journey started July 2013 when I was 37 years old. I already had Fibromyalgia. I was diagnosed with that in 1997 and managed that without medication. I worked full time with doing an office job which I travelled to by train. Then walked two city blocks. I began to notice that…
Why am I taking SO much longer to trudge up the hill to the railway station ? Why am I finding pulling down a whiteboard so much harder? Why are stairs getting to be difficult? Why am I having so much difficulty carrying equipment from room to room? Why have I pulled a muscle in…
It all began when I was nineteen years old. I had become very tired and suffered from headaches almost every day. I was skipping university, waking up in the afternoon and staying in bed all day. One night I was sitting in the car and felt pain in my left leg, mainly between the crease…
It is said that stress plays a large part in auto-immune disease. There were three stressors in my life – the death of my Father, the death of my first dog, and a bad diet. My DM kicked in immediately after Dad died – I was having a swim the day after his funeral, and…
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Myositis crept into my world…. George passed away in 2017. He was instrumental in establishing the Victorian Support group – he understood, he cared and he made a difference. In addition to his IBM George had a battle with skin cancer and a brain bleed. George would say to other Myositis patients to take special…
Myositis doesn’t stop me ….. Sadly, Jo Morris passed away in 2022 aged 31. She was an amazing young woman who lived a very full and spirited life despite the impacts on her body from Juvenile Dermatomyositis. Jo was a strong advocate for Myositis and for our Association. She is missed by all who knew…
