Name :  Ruth S.  

E-mail :

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.

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