I currently have little access to a doctor and my current primary doctor looks at me like I'm crazy whenever I bring this up and will not order any tests. He thinks my pain is solely arthritis.
When I was about 10 or 12, I slipped and fell, hurting my elbow. After it didn't get better, about a week, we went to the hospital for an x-ray. The doctors initially thought my elbow had been shattered, but they said I shouldn't be able to move it. I had a similar incident several years earlier where they thought my foot was broken, but discovered extra bones.
I was reffered to a specialist who took x-rays off all my joints, and discovered I had more extra bones in the joints, and I think my knee cap was made of 3 bones. I believe the number of bones matched on each side, so my left are right elbows looked the same. This seems to rule out Hereditary Multiple Exostoses and fibrodysplasia I think but I'm not sure.
It was the early 80's and I was told only 1 or 2 other people currently had the condition in the world, but current reporting might be better than then. I'm pretty sure one of the others was in South Africa. It was so rare, the doctor treated me for almost nothing in exchange for letting him do a medical film and submit something for a medical textbook. The doctor is gone and so are my records.
I don't think he said they would get any larger, but swelling and arthritis would limit my motion and could require surgury if I got bad arthritis. I believe he said the bones normally stop growing after puberty, and he pointed out that my knees and elbows and slightly bowed when he shot the film as one of the diagnostic things for doctors to look for. He said it was a genetic disorder but they didn't know how you got it. Again it seems similar to Hereditary Multiple Exostoses, except for the matching bones on each side,which I'm pretty sure is correct, but maybe I'm wrong; and I have no large extruding growths. They're pretty small.
Last thing I remember is he called in "rechler's" or "rensalier's" or "wretchlers" disease. I remember it ended in disease for sure. :D I'm guessing from my internet searches for rare bone diseases that it is no longer called this.
Any ideas so maybe I can get my doctor to believe me? The main "symptom" was tenderness in the joint (elbow), and now is causing problems with motion as I am 40 and getting arthritis pretty bad.
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