Name :    Jody C.

Adult:    39 years old

Location:  Raleigh, NC

Area(s) affected:  Left forearm

Personal History:

My melorheostosis was discovered on an x-ray when I broke that arm in 1995. I don't recall any pain prior to that or any pain for years thereafter. I was told it was a bone tumor and an MRI was performed. When the results came back benign, nothing else was ever said about it. I even forgot about it for a great while until 2008 when it began hurting. I went to Raleigh Orthopaedic Clinic in Garner, NC where another MRI was ordered. The results, again, were benign and I was dismissed without any explanation what-so-ever.
The pain eventually subsided until about 6 months ago. I called the facility that performed the MRI to get copies of the results which indicated that I had melorheostosis. I made another appointment with Raleigh Orthopaedic Clinic to have another x-ray and a discussion with the doctor about my 2008 diagnosis. Again, no discussion about the melorheostosis was offered. When I asked what it was, the doctor's advice for me was to "Look it up on the internet." and here I am today.
My arm hurts every day from the middle of my hand to my elbow. It has become difficult to lift things even as light as a cup of coffee. Some days are better than others; it is very stiff in the morning. I am a graphic designer and use a keyboard for a living and even that is presenting a problem for me. I am very fearful that my arm is getting worse and very concerned about what the future will be for me.

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