Tracy’s Journey – IBM

Tracy’s Journey – IBM

Sporadic Inclusion Body Myositis At the end of 2016, I was changing insurance companies and the new company sent me for blood tests. When the results came back, they immediately said: “we are not going to cover you, your CK levels are too high”. What the heck are CK levels, I wondered? I went off…

Christine’s Journey – Interstitial Myositis

Christine’s Journey – Interstitial Myositis

I’ve lived with Myositis for approximately 17 years. After taking 6 years to achieve a diagnosis, I understand the need for increased awareness and education for Myositis. My first symptoms were subtle. Perplexing reduced endurance for walking, difficulty rolling over in bed, getting out of chairs and fatigue over several years, eventually led to an…

Stephen’s Journey – Statin Induced Immune Mediated Necrotizing Myositis

Stephen’s Journey – Statin Induced Immune Mediated Necrotizing Myositis

In 2020 at the beginning of the Covid pandemic, I was in lockdown and doing lots of walking to maintain some fitness. I was also taking statins for high cholesterol.  My muscles and tendons started to hurt. I lost all strength in my legs, hips and eventually my arms and upper torso. When I stopped…

Ron’s Journey – IBM

Ron’s Journey – IBM

I used to play football and was known for my running speed but, at 43 years old I discovered I couldn’t run. That was in the mid 1990s.  Progressively over a few years I realised that I was losing strength. In 1998, I bought a pushbike to try to improve my quads. I would ride…

Christie’s Journey – Antisynthetase Syndrome with Interstitial Lung Disease and Polymyositis

Christie’s Journey – Antisynthetase Syndrome with Interstitial Lung Disease and Polymyositis

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…

Patient S’s Journey – Antisynthetase Syndrome, Interstitial Lung Disease, Polymyositis, Dermatomyositis

Patient S’s Journey – Antisynthetase Syndrome, Interstitial Lung Disease, Polymyositis, Dermatomyositis

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…

George Scott (dec)  – IBM

George Scott (dec) – IBM

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…