Name :     Jenny Huisman

E-mail :

Adult:     24 years old

Location:  Calgary, Alberta

Area(s) affected:  Left humerus and right upper leg

Personal History:

I was just diagnosed with Melorheostosis this year. I'm still skeptical myself about that being what it is because according to the doctor, there are other unidentifiable lesions on my left arm. Anyways, they discovered mine as a result of a fall I took a year ago and found something weird in my x-rays. The doctors were stumped so they sent me in for a bone scan and then an MRI. After all this they are thinking that maybe I have an enchondroma.

So I get refered to an orthopedic surgeon.  His diagnosis it melorheostosis.

I just went back today because I have been in so much pain, that even lying in a bath of water hurts it. My arm is always stiff as well as my fingers. My elbow feels pain a lot as well.

So far he says he doesn't know a whole lot about the disease and doesn't think there is much to be done at this point. So he's trying me on Celebrex for a month. I don't want to take pain killers the rest of my life. I don't like taking any kind of pills.

Does anyone know of any alternatives to this???


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