Name:   Roxanne

Adult33 years old

City and State:  Laurel, DE


Area affected by melorheostosis:  right leg from the knee down.

Personal History:

It's in my right leg, from knee down to ankle.  I also have calcium build up in my right knee.  I've had one surgery to my ankle on Jan 20, 2000 to remove lose fragments. In Jan., 1996 I had knee surgery to remove calcium build-up and now it's back again.  Like I said I had surgery in 1996, but they didn't  know what else or they didn't look --that was a doc in Easton,  Md.   Then my ankle got really bad and I now live in DE so I went to a doctor here and he did x-rays on my ankle and found it out.  Now he is lost.  He ore to help. but he said so far no luck; does not know what to do or how to help me.  That seems to be what they are all telling me. I've been to four different doctors. The pain comes and goes; sometimes it last up to two and a half months. Then it will stop for awhile and then bang its back again.  If I sit for a long time--15 to 20 min--my leg locks up or stiffens.  If I stand for long it starts to hurt or stiffens.  They say I am a no win case.  At first they told me that it runs in the family but now my new doctor says that is not true it does not run in the family.  He said you are the first I've seen with it and I'll not see anyone else with it for the rest of my life.  I am glad someone is happy about this because I am not. I am the one with the pain and having to live with it the rest of my life. And yet no one can do nothing for the pain.   Do you know anyone who has pain and what they are doing for it?  My doctor also asks for your e-mail so he can also try to find out more.

Return to Personal Histories