Malati Marlene Shinazy loved surfing and took for granted that her body was strong, agile, and capable of what she asked of it. Then her muscles started getting weaker. She noticed standing up out of a chair was harder than it used to be. She began falling with no explanation, and surfing became harder.
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.”
Please help people like Malati find support for this rare disease
“TMA is responsible for my correct diagnosis,” Malati said. “That was transformative, and it’s a direct result of TMA connecting patients to academics, clinicians, and researchers in a very approachable setting.”
Malati appreciates the incredible support she has received from fellow patients, support group members, and TMA staff. TMA introduced her to good friends who have helped her navigate her 20+ years with myositis. “I used to love country western partner dancing. Now my falls are so frequent, dancing is dangerous. A friend from TMA challenged me to start chair dancing! This is the magic of connecting with others who understand your disease.”
Please make a gift to TMA today to provide education and support to more people like Malati!
Your generous support of TMA will help us reach and inspire many more people with this rare disease. Thank you so much for your support.
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I have had two muscle biopsy’s and they both show a muscle disease but it’s inconclusive which one
My regular doc thinks it’s polymyostis
Where an I find the correct diagnosis?
Where can I find a dr to help me ?
I live in Memphis TN
Is there a Dr here?
Hello Regina, We’re sorry you are having so much trouble finding a correct diagnosis. We have a Find a Doctor tool on our website where you might find a provider in your area: https://www.myositis.org/patient-support/find-doctor/. It may also be helpful to connect with one of our support or affinity groups (most meetings are virtual) for advice and support: https://www.myositis.org/calendar/