Three years ago, 27-year-old Devin Petite started having trouble with her speech. She could barely sing a song and friends and family told her she sounded like she was either tired or had been drinking. “Physically, my muscles weren’t working. When I looked at pictures of myself, my smile didn’t even look like me,” Devin recalls.
Then her symptoms started worsening. She was constantly coughing through the night, had a hard time breathing, and one of her eyelids started drooping.
She turned to the internet to look up her symptoms. Devin read about a rare neuromuscular condition called Myasthenia Gravis and mentioned this to her primary care physician, who immediately referred her to Dr. Yessar Hussain at Austin Neuromuscular Center.
“In Devin’s case, she had classic symptoms of Myasthenia Gravis. And after thorough testing that included a nerve conduction study and blood tests, we were able to give her a relatively quick diagnosis. Many patients see numerous doctors before they come to us, so Devin was relieved to get such a quick diagnosis,” explains Dr. Hussain.
Up to 60,000 people in our country are diagnosed with Myasthenia Gravis (MG) and unfortunately, many more go undiagnosed, according to the Myasthenia Gravis Foundation of America. It strikes people of any age, although it’s more common in women under 40 and in men over age 60.
According to the National Institutes of Health, symptoms include:
- Weakness of the eye muscles (ocular myasthenia)
- Drooping of one or both eyelids (ptosis)
- Blurred or double vision (diplopia)
- Changes in facial expressions
- Difficulty swallowing
- Shortness of breath
- Impaired speech (dysarthria)
- Weakness in the arms, hands, fingers, legs, and neck
Devin’s immune system, like others with MG, makes antibodies against receptor sites of the neuromuscular junction (where nerves and muscle fibers meet – it’s essential for muscle contraction and movement). Her antibodies destroy the receptor sites faster than her body can replace them which causes the severe muscle weakness.
Fortunately, Devin was able to enroll in a clinical trial at NNRI (the research arm of ANC) looking at a newer infusion treatment for MG.
She says her symptoms have dramatically improved. Another area she looked to improve: her nutrition. She says the diagnosis pushed her into living a healthier lifestyle. “I now pay attention to what foods make my body feel good and avoid the ones that don’t.”
But most of all, she likes how she looks again in pictures. Devin says she feels lucky to be alive and is so appreciative of the small things in life, including having her smile back.