Name : Elaine Olson
Adult: 60 years old
City, State: Hamden, Connecticut
Areas of body affected: foot, femur, hand
My melorheostosis is on my right side: ankle, femur and some of the fingers of the right hand. I discovered the problem when I was 19 years old. The doctor I saw at the time brought my x-rays, etc to a medical board for a definite diagnosis. Because it was so problematic, I had surgery at age 23 and again at age 39 to scrape some bone away and test for malignancy. The surgery did not help and I developed a lot of scar tissue. At one point my information was directed to the Mayo Clinic to see if there was anything else that could be done. I have been to many doctors over the years, but no one could offer a solution. Further surgery was not recommended. Aside from the pain, I can no longer wear a full shoe on my right foot - I wear clogs. I have refused to take any pain medication. It has curbed a lot of physical activity such as walking long distances, skating, etc.
Recently I went for a bone scan. The view of the lateral spine was poor. My doctor suggested I take Fosamax. My question is will the Fosamax increase the bone density not only in my spine but in the areas affected by the melorheostosis? I have contacted 3 doctors in the area and they are baffled as this is such a rare disease. Is there anyone who can help me answer this question? I am currently trying to secure an appointment with a bone specialist in New Haven, Connecticut.
If anyone would like to contact me I would be interested in what they have to say.
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