Ron W. was in the hospital undergoing a replacement of his right knee in 2017 when a member his medical team asked him what might be causing his droopy eyelids.
Ron, a retired inventory analyst for a Bay Area pharmaceutical company, always thought it was because of allergies.
He was referred to a neurologist who diagnosed him with myasthenia gravis, a rare neurological condition in which there is a breakdown between the nerves and muscles, resulting in weakness of the muscles an individual normally controls, especially the eyes, face, throat, neck, arms and legs.
What is myasthenia gravis?
Myasthenia gravis is an incurable and progressive condition, though symptoms can get better with rest and drug treatments. This condition affects nearly two of every 10,000 people worldwide. In the U.S., approximately 60,000 people are living with the disease. The condition is more common in women under 40 and men over 60.
Symptoms also can include double vision, problems with speaking, chewing, swallowing and breathing, and drooping eyelids.
“That’s what gave it away, the droopy eyes,” says Ron, who moved to Gilbert after he retired in 2021 and generally sees himself in relatively good shape. “I’m a healthy 71-year-old man who works out regularly on a treadmill.”
Seeking additional treatment options
Through social media, Ron became aware of a clinical trial — Imvt-1401-3101 — for a once-a-week shot that addressed myasthenia gravis. In June 2024, he began seeing Anne Hatch, DO, a neurologist affiliated with the Neuroscience Research Division of HonorHealth Research Institute.
Initially, Ron’s strength improved, especially his breathing, chewing and swallowing. But, by Thanksgiving, he began having back spasms so intense he could hardly walk. He was immediately disqualified from the clinical trial.
“I think the shots were helping until the side effects started affecting me,” shares Ron, who was
initially disappointed. But because Dr. Hatch has been so much more knowledgeable than his previous doctors, Ron has continued seeing her as his regular neurologist and is looking forward to the day when another myasthenia gravis clinical trial becomes available.
“I’m her patient now, and I go all the way to Scottsdale to see her,” says Ron, who rates Dr. Hatch as “very competent.” He adds, “She seems like she knows everything. She’s more experienced. It’s good to know that I have a good physician who knows what’s going on.”
Ron also had high praise for nurse and clinical research coordinator, Kristy, for her work administering the clinical trial.
For now, Ron remains on traditional standard-of-care drugs for myasthenia gravis, which leave him feeling fatigued and his pocketbook tapped. “I’m willing to try (another clinical trial), because I get tired of taking medicine every day,” he explains.
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Offering patients innovative treatment options
The HonorHealth Research Institute is at the front of today’s most important health questions. Established in 2005, the Institute has become a patient destination for treatments often available nowhere else.
Clinical trial helps patient regain muscle strength
After decades of living with myasthenia gravis, Trey began a clinical trial through the HonorHealth Research Institute. Since beginning the trial, he has more strength in his eyelids and hands.
When should you see a neurologist for care?
Some medical conditions require the expertise of a specialist. That’s particularly true when signs and symptoms indicate a potential brain or nervous system issue. Understand when you should seek care from a neurologist.