Name : M.M.
Adult: 34 years old
City and state: Portland, OR
Area(s) of body affected: Right thumb and pinky finger (this is all that I know of that has been confirmed by x-ray so far)
I went in to the doctor in September 2013 for a very hard nodule on my right wrist. The doctor sent me for x-rays and at that time, there was an incidental finding in the bones of my thumb. The Radiologist suggested it had the appearance of Melorheostosis and further x-rays/consultation with the orthopedic doctor confirmed. I currently have no symptoms and I am not sure if any other limbs/bones are affected.
I am very perplexed by this diagnosis and am having a hard time understanding the short and long term prognosis. I understand that it is progressive, but what does that look like in an adult who is currently asymptomatic? I am also very interested in participating in any kind of research/genetic testing that may be available. (The moderator for this group may contact me if need be).
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