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In Their Words: Faces and Stories of Myositis
The journey for many of us with myositis can be complicated by overlapping diagnoses such as Sjogren’s, lupus, or fibromyalgia to name but a few. For me, this was polymyositis and interstitial lung disease (ILD). A dual diagnosis often means juggling varying demands in medications, treatments, physicians, and prognoses.
The greatest help for all veterans—long term or recently diagnosed—is TMA’s monthly Military Veterans with Myositis Affinity Group meetings. It was through this meeting that I was introduced to the team at Hill and Ponton law firm who helped to finally, after more than 11 years, get the VBA to recognize my disabilities from IBM. This proves the point that it is never too late to ask for help! Read more…
Some of the challenges we face are the delay in getting the right diagnosis because very few doctors have an idea of what myositis is. We do not have enough rheumatologists in Africa, and some countries don’t have any rheumatologists at all. Many doctors think we are making all these things up or maybe it’s a spiritual attack.
In hindsight, my first symptom was around two years before diagnosis. I was on a bush walk with a group of friends. The track was quite steep, and the walk should have taken about an hour. I was halfway through the walk when my leg muscles became shaky and fatigued. I had to abandon the walk and was led back down the track by the light of my phone in what was by now pitch-black darkness. Read more…
Malati saw one doctor after another. It took seven years to get what turned out to be an incorrect diagnosis, and all the time her weakness increased. Malati eventually found TMA and attended her first International Annual Patient Conference, where she spoke to a doctor on TMA’s Medical Advisory Board. He looked at Malati’s arms, asked her to make a fist, and said, “I think you have inclusion body myositis (IBM) because the smaller muscles in your arms are atrophying.”
“That was transformative, and it’s a direct result of TMA connecting patients to academics, clinicians, and researchers in a very approachable setting.” Read more…
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