I am a 49 year old male with Melorheostosis on my left tibia. I started noticing a lump on my shin when I was in high school but I assumed it was due to playing soccer and getting kicked in the shins so often. As it continued to grow, I started having moments of dull pain which prompted me to see a doctor when I was in college. He x-rayed it and decided it was simply something to keep an eye on. It wasn't until I was in my late twenties when living in Boston that I went to an ortho oncologist at Mass General who did bone scans and MRI tests. He did not biopsy it but decided it was likely Melorheostosis. I've been living in Maine for the past 15 years and no doctors here are familiar with this disorder. I have it x-rayed every couple of years to chart it's progress. The most noticeable difference now is the scaling skin that is worsening. My skin in that area is very brittle, itchy and is often bleeding. 

 

I am very lucky that the bone growth has not impacted my lifestyle. I do not experience extreme pain as many others do. I continue to play sports frequently. My concern is if the growth were to begin pressing on my fibula, I would be in extreme pain.