Tuesday, March 31, 2009

In the beginning...

Everything seemed fine at first. I went through the first years of my life with no major problems. I tended to hit my developmental milestones on the late side of normal, but it didn't seem to be late enough to really raise concerns. Looking back at old photos now I can see my slightly droopy eyelids and my weak smile.

I was never a fast runner, and always hated games like Duck, Duck, Goose! It was so frustrating to always get caught! But I was still pretty active as a child- jumping rope, playing on the trampoline, roller skating, riding my bike & climbing trees. I started really having problems when I was nine. I was falling down a lot- my legs would just give out. I could no longer do flips on the trampoline, and I absolutely could not run. My gym teacher told my parents there was something really wrong with me. So, the journey began....

Our first stop was an orthopedic doctor. He thought I might have arthritis in my knees, causing them to give out. I was sent to intensive physical therapy three days a week. Well, myasthenia tends to get worse with exercise. So I found myself quickly deteriorating. The doctors were stumped, but eventually someone suggested I go to a neurologist. It seems I spent the whole summer having various tests and procedures done, but finally I had a diagnosis. After about 2 years of struggling, I was finally able to put a name to my condition: Congenital Myasthenic Syndrome (CMS). My parents told me in the car on the way home from the doctor's office. The first question I asked was "Am I going to die?" They said no, so I was a little relieved by that at least. But I saw my dreams of being a cheerleader go up in smoke!

Oh well. Such is life. You never know what is going to happen. It took a long time for me to come to grips with this disease and the physical limitations I would have because of it. But with time came acceptance, and a determination to make the most of my life- regardless of my situation!

1 comment:

  1. Your story sounds so much like mine! I hope you are doing well! I finally got a diagnosis at age 27! Take care!

    ReplyDelete