Name : Anna K. White NOTE: DELETED BECAUSE MISDIAGNOSIS
E-mail : annakwhite@hotmail.com
Adult: 35 years old
Location: London, UK
Area(s) affected: Left tibia
Personal History:
I started noticing pains in my left shin around mid 2007, whilst I was
away travelling. The pain got progressively worse and was affecting my knee
joint as well. Pain seemed to be more acute during the night. In November
2008, I was referred to the orthopedic trauma dept of The Royal Hospital,
Whitechapel. An x-ray showed that ostensibly there appeared to be no knee
problem, but that the bone of the left tibia had hardened from the top to around
three quarters of the way down.
I was referred for a full body bone scan, MRI scan and CAT scan on the affected
area (including the knee). Results showed that everything was normal aside from
the hardening in my left tibia. There was also a very small spot of hardening in
the left thigh bone. Following these scans and further consultation, I was
diagnosed around March 2009 with melorheostosis. I was informed that although a
benign condition, further monitoring would continue on a 6 monthly basis, that
there is no known cure or treatment for this condition, in extreme cases the
only treatment is amputation, but this is very rare. Also, I was informed that I
may have had this condition for a long time. I appear to have no deformity of my
leg or foot at the present time.
Initially there was a warning that the hardening could be masking a bone tumor,
so I am actually pleased that is not the case, although I do have concerns as to
how the disease might progress as I age. The pain comes and goes, sometimes I
notice that I have not felt pain for a week or so, then it will return. I was
advised not to engage in any sports which cause pressure on the knee or tibia. I
have lost around 16 lbs in weight since my diagnosis and I find that has had a
positive effect on the knee pain.
There is on-going monitoring of my leg, I am scheduled to see the specialist
every 6 months. My next visit is the end of February 2010 and if there is no
change to my condition, the follow up will be reduced to every 12 months.