The day I announced to my network of friends that I had started a blog, I heard back from a schoolmate I hadn’t seen in almost 20 years. He had read my posts and told me that he too had muscular dystrophy. Except for a few people I met briefly at an MD chapter meeting last year, I don’t know anybody with muscular dystrophy. In fact, when asked what I have, almost every single time, people assume I have multiple sclerosis even when I answer very clearly that I have muscular dystrophy. The conversation often goes something like this:
“What do you have?”
“Muscular dystrophy”
“Oh yeah, my aunt has that.”
“Really?!” in an eager voice, thinking that finally somebody I know actually knows somebody with MD…but I always check, “Are you sure your aunt doesn’t have multiple sclerosis?”
“Yes, that’s what she has.”
Slightly amused and without a trace of impatience, I clarify, “I don’t have MS, I have MD, muscular dystrophy.”
“Oh, what’s that?”
And it’s perfectly natural that they would make the mistake; even my family doctor has confused the two on several occasions. After all, the rate of MS—especially in the northern countries—is much higher than that of MD. The prevalence of MS is as high as 1 in 500 in certain regions. Statistics for MD were a little harder to find because there are so many different types. I found one statistic for facioscapulohumeral muscular dystrophy to be 1 in 20 000 and for myotonic dystrophy, the most common form of an adult-onset muscular dystrophy, it was 1 in 8000.
So you can imagine how surprised I was when I found out that somebody I actually went to school with also had MD!
I haven’t really touched on the subject of MD in my previous posts and it wasn’t my intention to do so. The ailment I may possibly have seems irrelevant, and I’m more interested in writing about healing and happiness. But after speaking with my schoolmate, I thought it would be a good idea to explain this often-misunderstood affliction and compare it to MS.
From the MS Society of Canada website: “Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system — the brain and spinal cord. The disease attacks the protective myelin covering of the central nervous system, causing inflammation and often destroying the myelin in patches. In its most common form, MS has well defined attacks followed by complete or partial recovery. The severity of MS, progression and specific symptoms cannot be predicted at the time of diagnosis [...] MS can cause loss of balance, impaired speech, extreme fatigue, double vision and paralysis.”
Muscular dystrophy, on the other hand, is a genetic disorder that is characterized by progressive weakness and wasting of the muscles that control body movement. It’s caused by incorrect or missing genetic information that prevents the body from making the proteins it needs to build and maintain healthy muscles. About 100 different neuromuscular disorders fall under the umbrella of muscular dystrophy, but there are only nine diseases that are classified as muscular dystrophies—Duchenne, Becker, limb-girdle, congenital, facioscapulohumeral, myotonic, oculopharyngeal, distal, and Emery-Dreifuss. In most cases, a person’s muscles will continue to degenerate—quickly or slowly depending on the disease and the person—until s/he’s wheelchair bound. There is no (allopathic) cure.
Although there are some very serious and heart-breaking cases of MS, I’ve also heard stories of people with MS going into remission and even recovering completely. And it takes one story to give much needed hope. I’ve searched high and low for a fairy-tale MD story, but I haven’t found one…YET.
And that’s why I’m telling you all about muscular dystrophy. Because now that you’re aware of the staggering odds, you’ll be as thrilled and amazed as I will be when I finally write the story of my miraculous recovery.
So that you understand how far I will have come, here’s a bit of history and background about my current state:
Almost two years after I saw my first neurologist (who had misdiagnosed me with polymiositis), I was diagnosed by neurologist #3 with limb-girdle muscular dystrophy 2A (which involves the calpain-3 gene). 4 years later, neurologist #7 sent my blood out for a mutational analysis of the calpain-3 gene to confirm the diagnosis; at the time of my initial diagnosis, such a blood test was not available and diagnoses were based on muscle biopsies. 6 months later, the results came back negative. A third muscle biopsy and more blood tests later, I still don’t have a specific diagnosis, but my neurologist has no doubt that I have some form of limb-girdle muscular dystrophy.
So far, at least 15 different genes with mutations have been found to be responsible for various forms of limb-girdle muscular dystrophies, but scientists are still working on locating others. It’s possible that the gene responsible for my weakness hasn’t been identified yet…OR maybe I did have LGMD 2A and all my visualizations, positive thoughts and the healers I’ve seen have caused the calpain-3 gene to spontaneously mutate to a healthy state; and now I just have to help my muscles remember how to be strong and functional again!!!! My neurologist disagrees with this last theory, but that’s the assumption I’ll stick to on my road to recovery.
Having LGMD means the muscles closest to the trunk of my body are affected. Currently, I cannot get up from a regular chair, or climb steep stairs. I cannot raise my outstretched arms higher than a 30-degree angle from my body or lift my feet more than 5 cm from the floor (if I don’t use momentum.) When lying down on my back, I cannot lift my head or raise my extended legs. I walk slowly and my balance is precarious. I need really good floor grip to get out of a raised chair, or my car. How I look forward to the day when I’ll be able to once again wear dainty sandals without a heavy-duty tread! 
Now that school is almost over, I plan to dedicate myself fully to recovering my strength. I predict that after two months of regular exercise, visualizations, focused breathing and meditation, enough sleep, and positive expectations, I will be able to rise from a chair a little more gracefully, climb a stair without twisting my body awkwardly, lift my feet and arms a few more centimeters and walk more stably. Let’s see!
