Name : Scott Ragan
Adult: 25 years old
City and state: Stone Mountain, GA
Areas of body affected: Right knee and femur
Email: scragan52@hotmail.com
Personal History:
In hindsight, I've suffered from symptoms of this since I was at least 15 years old. I was always active through high school and college, and always suffered from stiffness and aching in my right knee. It wasn't until I spent a summer in Colorado, doing a lot of hiking and climbing, that I was aware of a problem. My knee was constantly sore, and would tighten up if it was kept in the same position for any extended time, making long car rides agonizing. After I graduated from college at age 22, I finally went to a doctor about the pain. My doctor referred me to an orthopedic doctor, who looked at my x-rays and told me, "I have no idea what's wrong with your knee." He ordered an MRI, and the radiologist determined I had Melorheostosis. It is concentrated in my right knee, with a strand that runs all the way up my femur and into my hip. My orthopedic doctor had heard of it, but had no idea what it was or what to do about it, so he recommended me to another doctor. This doctor basically told me to loose some weight to take pressure off that knee, and other than that, nothing could be done.
Shortly after starting a new job and getting new insurance, the pain seemed to be getting worse, so I decided to go through another round of doctors. I ended up with the head of orthopedic surgery at Emory University, who echoed the advice of the first surgeon, "loose some weight and keep taking Aleve, nothing we can do."
So, I take 2 Aleve a day, every day of my life. I've lost 30 pounds, and my knee hurts worse now than it ever has. I'm in constant pain, either directly from my knee, or from the stiffening of the joint. Occasionally my right hip hurts when I'm on my feet for extended periods of time, which I believe will only worsen in time. I have yet to let this stop me from being as active as I'd like to be, I just pay for it afterwards.