Name : Susan Bowes
E-mail : susanbowes3@sympatico.ca
Adult: 40 years old
Location: Peterborough, Ontario
Area(s) affected: Left tibia
Personal History:
Hello, I have just been diagnosed with melorheostosis. I am 40 years old. I started getting a stiff ankle about four months ago but was not too concerned. In the last two months I have had a stabbing pain in my left leg. It increased and my leg has been paining me to the point I went in to emergency at the hospital a couple of weeks ago. I was concerned about a blood clot as I knew that I hadn't injured my leg. The doctors at emergency where very shocked with my x-ray and told me they have never seen anything like it. After seeing the bone specialist here in town (Peterborough, Ont.), he remembered seeing something like it in a book. It is in the middle of my tibia and seems to have flared up for some reason. I have never had an x-ray before. I have also just been told I have a tumor on my pituitary gland which is causing high levels of pregnancy hormones. (I have been unwell with low iron, thyroid, hair loss etc.. for 15 years. Perhaps this tumor is the cause.) The bone doctor here thinks my increased levels of prolactin may have caused the flare up in my leg. He is hoping that after my tumor doctor treats me that it will settle down. He mentioned something about leaving a couple of inches above my ankle (in case I ever break my jaw), the "dripping"seems at this time to be in the middle of my leg. Does this mean that someday they will take the bone out? He did not give me too much information other than if I break or crack my leg it will never heal.
I can now feel the bone thickening under my skin, It has grown over the last few weeks. Can anyone give me some information as to what to expect.
Hope this information will help.
Sincerely, Susan Bowes