Name :   Carter C.

E-mail :  carcolby@insightbb.com

Adult:     54 years old

Location:  Noblesville, Indiana

Area(s) affected:  Left arm

Personal History:

The first time I heard of melorheostosis was about a year ago. I went to urgent care because of bad pain in my left arm. They did an x-ray and the doctor said he thought I had melorheostosis but wanted me to go to an orthopedic doctor to confirm. So I did and he confirmed what the other doctor said and said he was sorry but he could not do anything for me. Urgent care gave me pain medication and the pain lasted about two weeks. This was in Indianapolis, Indiana.   In 2003 I was in Stevens Point Wisconsin and woke up about 1:00 AM with bad pain and went to the emergency room for help.  They took x-rays and thought I had Pagets but were not sure so I had them forward the x-rays to my doctor at the Marshfield Clinic in Marshfield, WI.  I called later that day and they told me they have been aware of this for sometime. They gave me a prescription for pain medication and the pain went away in about two weeks. I have been treated for pains in my back and left arm for the last 15 years or longer but Marshfield never said what I had that I know of. Marshfield Clinic is a well known clinic and I don't know why they didn't tell me about melorheostosis. I have seen x-rays of my left leg over the years and it looks like the bone is marred or that's what Dr. Swensen had said. He also said he believed the bone in my left arm was very abnormally hard. Mayo Clinic confirmed that when they removed a bone growth off my hip when I was maybe 18 years old. Do you think you could find the article that was written back in 1965 by Dr. Swensen from the Children's Memorial Hospital in Chicago? I have a copy of my records from Marshfield and as soon as my wife gets home I will have her find them and see what more I can find out. I think my father gave me a copy of the bill for the 5 week stay in the hospital in Chicago in 1965 which at that time was close to 9,000.00 dollars.

  

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