‘Her Journey is my Journey’: Team Approach Leads UK Neurologist, Patient to Successful Treatment Plan
Pamela Branson has been a nurse for 40 years, 35 of those working at the University of Kentucky. After long days treating patients, she always turned to golf as a way to escape the stress.
So, when she couldn’t garner the energy to make it to the course in 2018, she knew something was wrong.
Eye drooping, extreme fatigue, double vision, and breathlessness led Branson to visit UK HealthCare – this time not as a nurse, but as a patient. She met with Zabeen Mahuwala, MD, assistant professor of neurology and clinical neurophysiologist who treats neuromuscular disorders and epilepsy. Dr. Mahuwala is an expert in immune-mediated neuromuscular disorders like myasthenia gravis, acute and chronic immune mediated neuropathy, and inflammatory muscle diseases. She serves as a principal investigator for several clinical research trials for these rare conditions.
Together, they were able to reach a myasthenia gravis diagnosis for Branson.
Myasthenia gravis is a chronic autoimmune disorder affecting the neuromuscular junction. Dr. Mahuwala said that the symptoms could be subtle in the beginning, yet disabling without treatment, especially with double vision, fatigable muscle strength, and trouble swallowing or breathing. Patients might not recognize they’re seeing double or facing shortness of breath without the physician asking the right questions. Patients with myasthenia gravis might also see variability of symptoms throughout the day.
“To perform detailed physical examination and understand their needs, it’s very important,” Dr. Mahuwala said. “With myasthenia gravis, you could be well in the morning, but as the evening comes, you won’t have that energy. You have to believe their symptoms, and that goes a long way in treating patients.”
Dr. Mahuwala has seen an increase in state-wide referrals for myasthenia gravis in recent years at the University of Kentucky. She said that it is a treatable disorder that can go in remission with appropriately chosen medications.
Some medications are used to manage short-term symptoms, and chronic treatment is usually done with immunosuppression through steroids or chemotherapy medicines or biological agents. Though steroids work, they possess side effects, so Dr. Mahuwala put Branson on chemotherapy medications to help wean her off the steroids.
At the beginning of the treatment, Dr. Mahuwala asked Branson what her goals were. Branson told her she wanted to play golf again. Dr. Mahuwala never let go of that goal.
“I’ll never forget her telling me that we’ll get there, but it’s going to take a while,” Branson said. “She just was so patient with me during this.”
The two met in March, then in April of 2018. That fall, Branson began swinging the club again, but couldn’t play more than four holes without feeling like she was in an “Olympic event.”
Branson remained steadfast in following her treatment plan, and Dr. Mahuwala continued to keep her on track. For three years, they maintained not just a doctor-patient relationship, but a partnership.
“We’re in this together,” Dr. Mahuwala said. “Her journey is my journey.”
If Branson had avoided seeking treatment, or if she had received a misdiagnosis, the disease could have worsened. She could have faced serious complications impacting her breathing and her ability to swallow food.
Now, Branson is as active as she has ever been. She walks four to five miles a day. She rides her bike and does water aerobics. Some days are better than others, but she is grateful.
Most importantly, she is back to playing 18 holes.
“I can’t say that my golf game’s any better,” she jokes. “But I’m just happy to be back out there doing what I love.”