In the last couple of years, I finally got a diagnosis for all the physical problems I had been having on the court, on the ice, after I was done with games and matches, after walking up stairs...
I spent years chasing doctors because of individual symptoms I had. I saw a cardiologist who could tell something was wrong, but was confused because my heart seemed health. I saw a endocrinologist who said everything was fine although he saw spikes in levels of this or that, but nothing that should be causing issues. I saw an orthopedic doctor when my knees were swollen so much I could barely walk. I saw many doctors because of general fatigue that I couldn't explain.
Then a couple of friends advised me to see a rheumatologist, because "they see crazy stuff all the time."
Unfortunately for me, I couldn't predict when I would have "episodes". Usually at some point during my sport, I would notice an irregular heartbeat. The most frustrating thing was trying to explain to people that, at times, my heartbeat was definitely not reflective of what I was doing at the moment. Sometimes while sitting on a changeover, my heart would thud so hard it would take my breath away. Sometimes, in the first few minutes of warmup, my heart would race like I had just run from an unleashed dog. Sometimes, thirty minutes or so after a hockey game or a soccer game, I would have total body debilitating cramps. Sometimes I would pass out from the cramps. In the days after, I would feel like I had been in a car accident. The cramps left me sore and fatigued.
On a smaller, less noticeable to everyone else, but me, I struggled with stamina. In the first five minutes of a game or practice, I seriously doubted my ability to continue. I was always sore from weight training. ALWAYS. The soreness never went away. There were days when I would sleep the day away, waking maybe to eat and then napping for hours on the couch until it was time to go back to bed.
But there were days I felt fine. There was a hockey tournament where I played five games in two days and had no episode. But there was a tennis match where I started to cramp thirty minutes into it. There was a day where I was officiating, a lowkey day with no problem matches. A beautifully cool fall day. When I got home an hour later, I started cramping and passed out.
So I was leery about the appointment. When I went to see the cardiologist, I was put on a heart monitor and because my body is like a car that only acts up when you are driving it and never at the repair shop, nothing was picked up by the monitor.
But the day of the appointment, after a week of not doing anything physical because of my swollen and sore knees, I had been having cramping episodes all morning.
The most severe cramping often occurs in my rib cage, which makes it hard to relax because every time I breath, it sets off a new round of cramps.
So by the time I went in from my appointment, I finally had proof of what I had been going through for YEARS. And in the moment it took me to introduce myself and my husband to the doctor and go through a list of about twenty seemingly random symptoms that I experience in some variation or combination, the doctor looked at me and said, that sounds like McArdle's disease.
He arranged for me to go to the University of Michigan's Neurology Center. On my way out, he gave me a piece of advise, "If you're ever having a particularly bad episode, drink a little tonic water with quinine in it. It will help ease the cramps."
My appointment with the neurologist was amazing, not only were they able to confirm the diagnosis with muscle biopsies and a liver biopsy, but my doctor was so encouraging. He actually treats high level athletes who have McArdle's including a couple of NFL players. He assured me that he only had one athlete who had to give up because of the musculoskeletal disease and it was a player from the Canadian Football league. So, he figured, if they could make it to that level and play with the disease, he could make sure I continued playing everything I wanted to play and working out at the level I wanted to.
Soon I will post about what McArdle's means to me as an athlete, but for now, know that I am well and my last episode was in October of 2015!
Stay tuned,
KS
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