Post by thilliard on Aug 1, 2012 21:46:14 GMT -5
I am a 53 yr old female very actice fitness instructor with ongoing pain. When I was in my 30s, I developed pain near my right tibia. After a couple of years of tests, it was determined that I had a cyst at the base of my tibia and it was removed. The pain subsided. During the diagnosis process, it was discovered that I had sclerosing on my tibia, so a bone scan was ordered. I was told there "was nothing active" going on, so not to worry about anything. Melorheostis was never mentioned.
Fast forward twenty years, and I have had a slew of problems with my right hip (labral tear), knee/tibia pain (diagnosed as arthritis, although a doctor DID notice the sclerosis on my tibia), and now a stress fracture in my 2nd metatarsal with dislocation.
I have gone back and reviewed my old bone scan results and other imaging and AT LEAST TWO DIFFERENT reports stated, "most consistent with Melorheostis." This was never mentioned to me! I can't seem to get anyone to "officially" diagnose me with this condition, since it "doesn't appear to be active." I am seeing a bone tumor specialist one every 6 months or so and he says there's no change. I am frustrated because I feel sure that the pain I am continuing to experience stems from Melorheostis, and I guess I would just like to be validated! I am tired of being told all these things are due to arthritis. I don't necessarily think a diagnosis would change things for me, but it would at least make me feel like the pain I am experiencing stems from something significant.
Has anyone else experienced similar frustration?
Fast forward twenty years, and I have had a slew of problems with my right hip (labral tear), knee/tibia pain (diagnosed as arthritis, although a doctor DID notice the sclerosis on my tibia), and now a stress fracture in my 2nd metatarsal with dislocation.
I have gone back and reviewed my old bone scan results and other imaging and AT LEAST TWO DIFFERENT reports stated, "most consistent with Melorheostis." This was never mentioned to me! I can't seem to get anyone to "officially" diagnose me with this condition, since it "doesn't appear to be active." I am seeing a bone tumor specialist one every 6 months or so and he says there's no change. I am frustrated because I feel sure that the pain I am continuing to experience stems from Melorheostis, and I guess I would just like to be validated! I am tired of being told all these things are due to arthritis. I don't necessarily think a diagnosis would change things for me, but it would at least make me feel like the pain I am experiencing stems from something significant.
Has anyone else experienced similar frustration?