Name : Ruth S.
E-mail : rdsem@intermode.on.net
Adult: 34 years old
Location: Perth, WA, Australia (but grew up in MD, USA)
Area(s) affected: Left ankle (fibula/talus)
Personal History:
My symptoms began after I sprained my ankle when I was a pre-teen (10 or
11). Ever since, I have experienced intermittent joint stiffness and achy pain
in my left ankle. Symptoms were consistent enough that I have since referred to
it as my "bad" or "weak" or "loud" (pops a lot with positional changes). But it
was inconsistent and mild enough that I couldn't explain it well to health
professionals (and often by the time I'd have appointments, it would resolve).
As I've gotten older, I've noticed the contour above my left ankle is wider than
my right. Damp and rainy periods often seemed to coordinate with when it felt
worse. The pain increased during the first 3 months of my pregnancy in 2006, and
I saw a Physio (PT) which helped.
In 2009, the pain and contour continued to increase. I saw a GP in March/April,
who ordered an ankle Xray. Nothing abnormal was observed then. In July, the pain
was the worst I've ever experienced (generally achy, sometimes shooting, very
painful at rest - sitting and lying down, and it would wake me at night). The
contour above my ankle was large enough to be notable by the GP. She suggested a
CT scan, and when she gave me the findings honestly reported to me that she had
to google the diagnosis.
The CT scan found "a large sclerotic lesion within the distal fibular with
expansion of the fibular shaft present with presence of 'candle wax dripping'
appearance reflecting continuous interrupted streaks of sclerosis along fibular
tibular bone. ... There is the finding of a sclerotic lesion with spiculated
margin within the talus at the lateral aspect involving the talar body and talar
neck. No marked soft tissue abnormality noted with no evidence of thickening of
the overlying subcutaneous soft tissues seen. ... Features consistent with that
of melorheostosis."
Comments: I'm relieved to finally have a reason why, although like so many
people here living with melo probably now have more questions than answers. I'm
seeing an Ortho for further opinion and management options - hoping he's heard
of melo (or is at least motivated to learn!).
Thank you to all the patients who have shared their stories. It is a relief to
know I'm not alone, and I identify with what many have said. Thank you to the
organizers of this Association and the website for connecting us to people and
information. My next step is to find myself a good Physio.