Name : Carla Bonney
Age: 35 years old
City/State: Portsmouth, NH
Areas of body affected: both shoulders -- pain more severe on the left
E-mail : ArisMom@gmail.com.
Personal History:
I had been ignoring a shoulder pain for years; I used to lift weights pretty intensely, which is when I'd started noticing the pain, and assumed that was the cause. Two summers ago driving started irritating it - and then any kind of reaching & lifting up (like putting the dishes away). So I finally gave in and went to the doctor, who sent me to an orthopedic woman, who took x-rays of my left shoulder. She looked at the x-rays, and called me to re-take them, as well as some comparison x-rays of my right shoulder. I think she thought the x-ray tech had done something wrong. She came back to me with a tentative diagnosis of melorheostosis, which she confirmed after talking with specialists and surgeons. She gave me a prescription for piroxicam, which I take once a day and which definitely relieves the pain. She's also given me some exercises to help strengthen the muscle around the bone - basically range-of-motion type things with light (3lb) weights. I'm not sure what the next step will be. I see a specialist in November, when they'll take more x-rays. I don't get the impression that the doctor I've been seeing sees this as any big deal, which concerns me, but I'm going to wait until I've seen someone who actually has some knowledge about melorheostosis before I let myself get too stressed over it.
After reading some of the other histories, I feel like my experience is pretty mild thus far, but I'd like to talk to others, be there for them and play "guinea pig" if the opportunity ever arises. It's REALLY nice to know there are others going thru the frustration of having an affliction no-one, including some doctors, have heard of.