MY STORY:Myasthenia gravis (MG) might be misunderstood, but existing treatments are extremely effective, writes Catherine Foley
A RECENT campaign to increase awareness of myasthenia gravis (MG), a severe muscle weakening condition brought my own experience of the disease back to me in all its mystery and weariness.
It's a rare condition, affecting about 450 people in Ireland, although the Myasthenia Gravis Association in Ireland believes that twice that number remain undiagnosed or misdiagnosed.
I was diagnosed in my early 20s. In my innocence, it was the Greek sounding words myasthenia gravis which intrigued me when I heard them spoken first by Dr Roderick Galvin, the consultant neurologist in what is now Cork University Hospital.
Although my symptoms, when they occurred, were dramatic and bewildering, I had eased into an acceptance and an accommodation of the telltale signs - heavy, limp limbs, drooping eyelids, flaccid facial muscles and a great weariness.
In hindsight, the onset had been happening for over a year or more but it was only in the last couple of months that I began to wonder what was wrong.
My knees were cut and torn from all the times I had fallen as I walked to work in the mornings. I'd slip when my legs suddenly turned to jelly. I had grown used to the heaviness in my arms and I used to wonder why I found it so hard to lift them when I went to put a key in the front door, or brush my hair, or wash my teeth.
But after each episode of inertness and heaviness, the feeling of lethargy would ease off and I would carry on my way and forget about it.
I didn't notice that each time this mysterious heaviness happened, that it was becoming worse, progressively more pronounced and more pervasive.
I was missing occasional days from school but still there was nothing I could put my finger on. MG is an auto-immune disease, which causes a breakdown between the nerve endings and muscles, causing a loss of effectiveness in the muscles, especially of the arms, legs and eyes.
It was only when I fell once again one Sunday morning on my way home from mass that my mother, in light of all the weariness and the other falls I'd had, became alarmed. She took me to our doctor, the late Dr Anne Casey, who made an appointment with the consultant neurologist in Cork.
Dr Galvin noticed how I sat up with difficulty, lifting myself like an old woman from the examination couch. He diagnosed me immediately and I was admitted to hospital that weekend. Tests were carried out, which confirmed his diagnosis. Treatment, including a thymectomy, the surgical removal of the thymus gland, was carried out and I was prescribed medication. Then I went home to recover and adapt to this new condition.
I had to learn about being patient. I had to listen to my body and become health conscious. I had to learn to take my tablets. In some ways, for this writer, myasthenia gravis proved to be one of life's great teachers. I learned about moderation and about being calm.
I learned to respect my body. I became an adult, appreciating my health and my fitness. I began to take care of myself. I learned to ignore aerobic classes and dieting fads. I became a wiser person because of MG. I definitely became healthier, more conscious of my diet, of my daily exercise and I was also lucky that I responded to my treatment.
That was over 20 years ago. I have had no symptoms for more than 10 years. I no longer take medication. Since then, I've been mountain trekking, scuba diving (briefly) and salsa dancing. I walk briskly into work each day - a half-an-hour walk. I have no sense of being weak, sick or weary.
Karen Clancy, national co-ordinator of the Myasthenia Gravis Association in Ireland, says that "because there is a low-level of awareness of MG in Ireland, we find that people presenting with symptoms are often misdiagnosed with conditions such as ME. Sometimes it can take months or years before it is medically established that they suffer from MG."
Some people with "worse illnesses" have phoned in, hoping this might be their diagnosis, wondering if "there's any chance I might have been misdiagnosed," she says. "Early diagnosis of MG means that patients can access comprehensive treatment at an early stage to prevent further debilitation."
Julie Dalton, a lab technician from Westport in Co Mayo, was diagnosed two years ago. Within a week of being put on medication, she says her speech improved. "There was no more slurring," she recalls.
Before that, she had grown used to lying in bed with breathing difficulties, as if "a small child was sitting on my chest".
When she was diagnosed, she says: "I had never heard of it. I remember thinking it was the end of the world. I felt very isolated, even in the hospital."
The Myasthenia Gravis Association, which was set up in Ireland eight years ago, was "a lifeline", she says. "It was great to connect with them. Most [ of the people she was put in touch with] were doing fine."
Today, Dr Galvin reminds me that Aristotle Onassis also had this disease and that there are some old photographs of him in the company of Maria Callas with match sticks holding up his eyelids. But that was before new treatments were discovered, he explains. "In the past 10 to 15 years," he says, "there have been a lot of advances."
• A of public awareness meetings will be held over the coming months. For more information, e-mail info@mga-charity.ie tel: 1800 409 672 or log on to www.mga-charity.ie
• Readers are invited to e-mail healthsupplement@irish-times.ie outlining their own experiences of the health service, good or bad.