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.