Mary Walden has always looked forward to summer as a time to get outside with her three children and boyfriend, watch sunsets and take care of her plants. However, the triple-digit days in her hometown of Odessa, Texas have recently become too much for her body to handle. The summertime heat is more challenging since she was diagnosed with myasthenia gravis (MG).
MG is a chronic autoimmune disease in which there is a dysfunction of the neuromuscular junction. Antibodies destroy the communication between nerves and muscles causing muscle weakness. Mary has a very rare form of MG called Muscle-specific tyrosine kinase (MuSK) MG affecting only 5-8% of all MG patients.
“MuSK refers to the antibody associated with her type of MG,” explains neuromuscular neurologist Dr. Yessar Hussain. “When she came to see me in May 2023, she had numbness on her left side, weakened facial muscles and trouble breathing at times. The heat may worsen MG symptoms.”
“My symptoms came on rapidly in early 2023,” says Mary. “I thought I had bad seasonal allergies at first, because I had watery eyes and blurred vision along with a numbness in my throat. I noticed a weakness all over my left side quickly after that and thought I was having a stroke.”
Mary experienced nearly all of the common MG symptoms:
- Drooping eyelids
- Double vision
- Facial weakness and difficulty smiling
- Trouble swallowing and speaking
- Slurred speech
- Shortness of breath
- Muscle weakness in limbs
Enrolling in a Clinical Trial at ANC
Within a few months of being diagnosed with MG, Mary had two stays in the hospital challenged by weakened respiratory muscles. She spent several nights in the intensive care unit and was even intubated at one point. Then her neurologist in West Texas referred her to Dr. Hussain at Austin Neuromuscular Center who offered her new hope in the form of a clinical trial in their research department, the National Neuromuscular Research Institute.
“Clinical trials have really advanced the treatment of MG recently,” says Dr. Hussain. “It is an exciting time for MG patients as there are now more options to get their autoimmune disease under control.”
Getting those life-threatening MG symptoms under control has been a huge relief for Mary. She is having significant improvement in her breathing, swallowing, eye drooping and general fatigue.
“I have truly been blessed with my medical and support team,” says Mary. “ANC has gone above and beyond to make sure I got into a clinical trial and has stuck with me every step of the way. Dr. Hussain and the staff are the sweetest souls I have ever come across in the medical field.”
Mary still cannot be outside in the Texas summer heat for long periods of time, but she gets outside long enough now to tend to her favorite plants and enjoy a sunset from time to time. She is extremely grateful to see hope on the horizon for all people living with MG.
To learn more about Austin Neuromuscular Center, what we treat, and our clinical research, click here or call (512) 920-0140. Follow us on Facebook, LinkedIn, Twitter, and Instagram for updates.