Ron Wong was in the hospital undergoing a replacement of his right knee in 2017 when a member of the medical staff 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 (MG), 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.
MG is an incurable and progressive condition, though symptoms can get better with rest and drug treatments. This condition affects nearly 2 of every 10,000 people worldwide. In the U.S., nearly 60,000 people are diagnosed. 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,” said Ron, 71, who since 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.”
Contacted HonorHealth Research Institute
Through social media, Ron became aware of a clinical trial — Imvt-1401-3101 — for a once-a-week shot that addressed MG. In June 2024 he began seeing Anne Hatch, M.D., 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,” said 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 MG clinical trial becomes available.
“I’m her patient now. I go all the way to Scottsdale to see her,” said Ron, who rates Dr. Hatch as “very competent. She seems like she knows everything. She 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 Osgood for her work administering the clinical trial.
For now, Ron remains on traditional standard-of-care drugs for MG, 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.”
