Name : Bobbie  

Adult:  52 years old

E-mail : 

City, State:  Granite City, Illinois

Areas of body affected: both feet, left leg and hip

Personal History:

I first started out by going to a podiatrist for pain in my left foot. He took x-rays and gave me a shot of steroids which didn't help so he gave me another shot of steroids that didn't help. So I changed doctors. He also took x-rays and gave me two shots of steroids that didn't help. I kept looking at my x-rays and to me it looked like I was getting little worm holes in my bones. Finally I went to a doctor who also took x-rays.  After reading my film he said that he knew what I had but he had never seen a case except in books. He sent me to a doctor at Washington University that had been published but all he wanted to do was observe the progression of the disease and possibly be published again because he had never seen an adult case. Some days the pain is unbearable. 

Comments:  I was happy that I found this site because it helps to talk to others that understand what you are talking about. I  would like to correspond with any and everyone. My e-mail is I live in Granite City, Illinois which is just across the river from St. Louis, Mo.

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