In the 1970s, Elyse Bruce saw her teenage brother deal with MG — but in the 2000s, she struggled to find a diagnosis for her young son’s mysterious symptoms
I was a pre-teen in the 1970s when my older brother began having problems. My parents thought he was just hitting those teen years when rebellion is the word of the day. He went from being an excellent clarinetist to a mediocre one, and the more he practiced, the worse he sounded. He would get up from the supper table and fall into the wall; my parents asked him straight out if he was on drugs. It was a difficult time all the way around until he was diagnosed with myasthenia gravis (MG).
At first, all we were told by doctors was that it was a very rare, life-threatening neuromuscular disease. In 1974, my brother had a thymectomy — surgical removal of the thymus gland, a specialized organ of the immune system that’s located in the chest — at University Hospital in Saskatoon, Saskatchewan, Canada. I remember how scared my mom was that my brother wasn’t going to pull through the surgery.
But my brother was a hardy sort, and he spent weeks recovering at home. Once he recovered from the surgery, all of the symptoms of MG seemed to disappear, and life was good again.
What was even better was the fact that doctors told my parents that they would never see MG again in their lifetime, or the lifetimes of their children. That’s how rare it was. We would never again see or hear of MG in our family!
Fast forward from the 1970s to the late 1990s and the 2000s.
My son, Lewis, had always been a child with health conditions, some of them mysterious, some of them more mainstream. I was accused by friends and family of catering too much to him when, as an infant, he couldn’t seem to hold his own bottle while feeding. I was accused of indulging him as a toddler when he didn’t seem able to walk very far on very hot and very cold days, and I carried him in my arms. After all, he was as strong as you could imagine when he was determined to get somewhere in the house or in the backyard.
When he finally began talking, his speech was difficult to understand at best, but my boy was certainly a communicator … or wanted to be.
As the years passed, there were times when I sat in the emergency room with Lewis wondering what was going on with him. There were times when the doctors couldn’t explain the weakness or the pain, and they simply wrote “mystery illness” on his medical chart. Other times, they whispered among themselves and bandied about the possibility of Munchausen syndrome by proxy.
For a divorced parent of one, the only thing that could be done was to persist in trying to get my son the medical care he obviously needed.
It was the fall of 2002 when my 7-year-old son cried that he couldn’t walk. He was so tired, he said, and his legs were painfully heavy like cement blocks. I whisked him off to the emergency room only to be told that he probably had strep in his muscles.
He began to experience double vision, and although the ophthalmologist was of the opinion that my son merely wanted glasses so he could look like the then-popular Harry Potter, he was given a prescription for a pair of glasses. Although he was told to only wear them when needed, he wore them from the moment he got out of bed to the moment he went to bed. I’d ask him if they helped with the double vision, and he’d tell me that sometimes they did and sometimes they didn’t.
In the spring of 2008, my son (who seemed to be the only kid who caught colds when another kid down the street sneezed) came down with a very nasty flu bug. As was often the case, his legs hurt so badly that he couldn’t stand the pain. Ten days later, he seemed recovered … except for that left eyelid that wouldn’t open no matter how hard he tried. He was still very weak, but this time he appeared to have more trouble than usual walking and talking.
A quick trip to the pediatrician, and Lewis was rushed to the hospital for all sorts of tests. He seemed to be exhibiting symptoms that were consistent with a brain tumor just behind the eye, the pediatrician told me solemnly.
“Could he have myasthenia gravis?” I asked, remembering some of my brother’s symptoms from the 70s.
“No,” I was told, as he opened a large, hardcover medical book. “Myasthenia gravis is a disease old people get.”
“And sometimes kids,” I added.
“No, not kids.”
“My brother had MG back in the 70s.”
The pediatrician seemed to doubt I was remembering what my brother’s diagnosis had been back in the 70s, but he agreed to send my son to the Hospital for Sick Children in Toronto (near where we lived at the time) to be tested for a brain tumor, with a sidenote about the MG.
At Sick Kids, specialists rolled their eyes at my request to test my son for MG. After all, his own pediatrician had sent information that he believed the symptoms were consistent with a brain tumor just behind the eye. Just to prove me wrong so I would stop talking about myasthenia gravis, they agreed to do one simple test, the Tensilon challenge test. [Editor's note: During a Tensilon challenge test, the drug Tensilon, which prolongs the nerve-to-muscle signal at the neuromuscular junction, is injected into the patient; immediate improvement in muscle activity indicates a diagnosis of MG].
As my son’s eyes began to open wide [meaning the Tensilon was effective at restoring muscle activity], the doctors and nurses scrambled to get the transformation on cell phone cameras (they had doubted me so much, they hadn’t even set up a camera to document the results of the test as they happened). And so it was determined that my son did, indeed, have MG!
Just a bit more than a year later, my son was scheduled for a thymectomy. His symptoms had become so severe that no one could understand him when he spoke, his eyelids rarely opened past a small sliver, his left leg dragged incessantly, and he was so tired, he could only attend eighth grade half-days. Some days he couldn’t even manage that much.
It’s been four years since that surgery, and my son and I are still waiting for the MG to go into remission. Last month, he underwent eye surgery to address the forever-drooping eyelids, and there may be more surgery related to the MG in the future. None of the doctors seem to know when, or if, this disease will go into remission.
Because Lewis exhibited symptoms at a very early age, and because my brother had a diagnosis of MG, we have talked with Lewis’ doctor on a number of occasions about whether Lewis might have congenital myasthenic syndrome (CMS) [the genetic form of the disease which is not caused by an autoimmune response]. However, his pediatric neurologist says he is not sure whether Lewis’ “brand” of myasthenia is in fact the congenital form.
Today, despite myasthenia gravis and several other serious health challenges, my son doesn’t let anything stop him from making plans for the future. Being a computer buff, he reasons that MG is like a Trojan virus that somehow found its way onto his muscular mainframe. Someday, he hopes that doctors will figure out a way to change the “exe” extension on MG and turn it into a “jpg.”
He has a wheelchair for days when he just can’t walk on his own steam. He checks the Doppler radar every day (sometimes more than once) to gauge what’s going on with the weather. If it looks like it’s going to be a particularly hot or cold day, he factors that information into his plans. He takes his health seriously, and relies on apps on his cell phone and laptop, as well as a visual schedule, to remind him to take his meds on time. He also tracks his symptoms by way of a spreadsheet he created in order to identify possible patterns which will then help him to monitor what negatively and positively impacts his MG.
Lewis will be graduating from high school this June, and is raising funds online to continue producing his 30-minute community radio show, “The Geeked Mind,” which focuses on science fiction, anime and manga. In his words, his goal is to become, “a productive taxpayer.”
MG is not the end of the world, but it certainly complicates things. But he’s cool with it; he doesn’t let MG dictate how much zest he has for life!
MDA is committed to finding effective treatments for MG and to improving quality of life for people with the disease.
To learn more about MG research, medical management and more, be sure to check out MDA's myasthenia gravis resources: