Myasthenia gravis is so difficult to diagnose, Linda MacMullen isn’t even sure how long she has had the autoimmune disease.
“I was diagnosed in 2001, but I know I had it for at least 10 years before I was diagnosed, and my mom was sure I’ve had it all my life,” said the Courtenay resident.
Myasthenia gravis (MG) is a rare neuromuscular/autoimmune disease that affects an estimated 30,000 Canadians.
The disease causes weakness in the skeletal muscles responsible for breathing and moving parts of the body, including the arms and legs.
Certain muscles, such as those that control eye and eyelid movement, facial expression, chewing, talking, and swallowing are often (but not always) involved in the disorder. The muscles that control breathing, and neck and limb movements may also be affected.
“It can be really difficult to diagnose,” said MacMullen. “People can get the blood test, it can come back ‘negative,’ but that doesn’t mean they don’t have it. They [medical community] still don’t know all the antibodies that are responsible. They are finding more antibodies all the time.”
For years, doctors were baffled with MacMullen’s condition. A chance appointment with a local ophthalmologist changed that.
“My regular ophthalmologist was on holidays so I saw the ophthalmologist who was filling in for mine – Dr. Shaver – and within five minutes he said, ‘I think you have this.’
“So he did the blood work, and of course I came back negative – I don’t do things the easy way. So they sent me over to Vancouver, and a neuro-ophthalmologist got super excited when he saw my eyes and said that yes, I did have it.”
Treatment of MG varies from patient to patient. For MacMullen, treatment involves three consecutive days of immune globulin intravenous (IGIV) every three weeks.
“It’s four hours each day for three days in a row. I repeat that every three weeks,” she explained.
June is Myasthenia Gravis Awareness Month. The Comox Valley MG Walk 2019, to raise funds for the Myasthenia Gravis Society of Canada, takes place Sunday at 10 a.m. at the Airpark in Courtenay.
Registration is at 9:30, next to the kayak rental location (corner of 20 Street and Cliffe Avenue).
MacMullen said there were some positives that came out of the media exposure surrounding last year’s inaugural walk, which attracted 20 participants.
“In a lot of ways, that first walk was very successful,” she said. “From personal experience, from ending up in the emergency room at the hospital, I actually had doctors who knew what the heck myasthenia was. That’s always been one of the big problems.”
MacMullen said since the walk last year, she has met more people that have MG, and she is hopeful of their presence at this year’s walk.
“Since last year’s walk, I know of at least two other people that have it, and there are probably a lot more that have the symptoms but just don’t know what it is,” she said.
Donations will be collected at the walk itself. There will also be coffee mugs, shirts, ball caps, lapel pins and bracelets available for purchase at the event. All funds raised will go to the Myasthenia Gravis Society of Canada, for research.
For those who would like to donate prior to the walk, MacMullen has set up a website: https://bit.ly/2IrD7Sn
For more information, visit the Facebook page: Canada’s MG Walk, or contact MacMullen, at 250-338-4542.