Episode 1: Communicating with your doctor as a Myositis patient

In our first episode in our new webinar series, "Managing Your Care Starts with You," we talk more about how the patient /doctor relationship is changing in myositis. What should you expect? How do you make your voice heard? And, Dr. Bhai answers several patient questions.

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New Series: Managing Your Care Starts With You

Join us in welcoming Dr. Salman Bhai, our Medical Advisor, for a New Series called – Managing Your Care Starts With You, a webinar we just launched in May, Myositis Awareness Month, that over the coming months will explore how doctors today are taking a patient-centered approach to managing the care of our diverse myositis community.

We hear a lot about patient-centered care, patient-centered research, patient-centered outcomes, but what does it really mean for the myositis community, for research and drug development, and for your care?

In subsequent webinars, Dr. Bhai and others will tackle such care topics as:

When You are at Risk – Care strategies on different topics -cancer screening, dysphagia, ILD, emotional health, underserved myositis communities

- Managing Your Care Team
- The Rollercoaster of Flares
- The Pain is Real – a review of MSU’s 2019 survey of over 450 patients on Pain and Opioids, what current research is telling us about pain, and current thinking on treating pain, real-life strategies
- The Alphabet Soup of Myositis Antibodies – what are they and what do they tell us about managing our care

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MSU's Medical Advisor, Salman Bhai, M.D.

Dr. Salman Bhai is an Assistant Professor in the Department of Neurology and Neurotherapeutics at the University of Texas Southwestern Medical Center and Faculty Member at the Institute of Exercise and Environmental Medicine (IEEM) at Texas Health Presbyterian Hospital Dallas.

He is grateful for the unique neuromuscular mentorship, training under several neuromuscular experts including Drs. Anthony Amato and Steven Greenberg (Brigham and Women’s Hospital) and Drs. William David, Amanda Guidon, and Reza Seyedsadjadi (Massachusetts General Hospital), amongst several others.

Dr. Bhai specializes in the evaluation, diagnosis, and treatment of neuromuscular disorders. He specifically focuses on patients with inflammatory and metabolic myopathies as well as those with immune checkpoint inhibitor complications.

His research focuses on understanding how muscles communicate with other organ systems, particularly when muscle is inflamed, like in myositis. The goal of his research is to better understand, diagnose, and treat patients with myositis. This will be achieved through exercise and muscle physiology studies of myositis patients by analyzing biospecimens for molecular perturbations. He also will offer clinical trials for myositis patients.

Dr. Bhai is dedicated to helping patients and their families understand and navigate difficult conditions by providing world-class clinical care.

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Learn more about Dr. Bhai, and stay tuned for Episode 2, which will be coming later in 2021. If you are a patient or caregiver living with myositis and you would like to suggest topics, we would love to hear from you.

Also, be sure to check out our Exercise in Place series!

[cherylcarlson]

Now balance this algebra equation by doing a video for doctors to improve assessment and decrease distress in patients

[gracielavalentin]

My lab work is within normal levels but still feeling foggy and my lower legs and feet hurts every day and all day. It hurts to walk why is that. Doctor did X-rays all normal. Why the pain

[gracielavalentin]

Also doctor said not related to myositis

[itisfinishednowtimetoclean]

Diet and exercise do help. Non inflammatory reduction of red meat. I have Systemic Lupus Erythamtosis. I have a swollen stiff and very uncomfortable left thigh for 2 years. I need to figure out what’s going on with my leg and steroids help for a small window. I don’t know where to go from here, do we insist? I am weary of the pain, the fatigue…. I woke up in hospital after being found unconscious one evening and while in Hospital my CK levels were <3000. But I also had a huge (size of an orange) blister on the bottom of my foot so could have been SJS/TENS, as I’ve had purple rashes for a year prior to being found unresponsive. I am utterly exhausted and feel frustrated that my care after feels so unexplored. I am willing to travel to a clinic to be further assessed if needed. Where can I go to have evaluation, In detail? I cannot get my doctors to understand how Frustrating this all is. Please respond. I live in New Mexico.