Diagnosis of Pagets Disease : I was first... - Paget’s Support

Paget’s Support

Diagnosis of Pagets Disease


I was first told in June of 2010 that I had Pagets disease in my right hip and that it was deformed. I was having alot of problems with my right knee, I had no cartilage left, I was 50 years old and needed a knee replacement. The PA that diagnosed me got me in to see a Primary Doc the next day to have my knee injected with cortisone. I had a lot of questions by the next day and was asking the primary Doctor questions and he was not answering me. So I said I have looked up Pagets Disease and I have a lot of questions. He told me I didnt have Pagets Disease, and that he told the PA that she should not have told me that. He said she was very young and had just graduated from the University. I wanted to believe him.

A year later I started having a lot of pain in my neck and shoulders. More arthritis was discovered and I have a bulging disk in my neck. I would complain about pain and he would tell me it was muscle pain. Last year I fell and had to go in for an xray to make sure my knee replacement was not affected by the fall and was told that I have Pagets Disease. I went back to my primary doctor and told him what happened and the xrays and he still told me I do not have pagets disease that he would know if I did. I said what about the xrays in 2010? My hip has pagets and its deformed. He told me it was a shadow on the xray.

Finally my orthopedic surgeon last December told me there was no doubt that I have pagets disease and that I needed a bone scan and said for me to have the primary Doctor order it. I told him that my primary Doctor did not believe that I have pagets disease. So the orthopedic doctor ordered the scan and referred me to a endocrinologist. After the bone scan due to long waits to get in to a Doctor I returned to my primary doc and showed him the report from my bone scan showing I have pagets disease and that I needed more xrays and an MRI of my skull. He looked in his computer and said Oh this must have just creeped up on you.

So now I have Pagets in my right hip that is deformed, , my hips are not symmetrical, and so my gait is odd. Just this past week when I lift my right foot to take a step, I feel much pain in my left hip. The pain is unbearable some days. The pagets is in my right femur, left clavicle, which has fractures, in my sacrom, right hip and right pelvis.

I need an orthopedic surgeon who can do the hip replacement. I live in Michigan and am scheduled at the Cleveland Clinic March 29 2016. I am hoping they can help me.

Thank you