Name : Dawn D.
E-mail : firstname.lastname@example.org
Adult: 43 years old
Location: Toronto, Ontario Canada
Areas affected: legs, feet, hands, right wrist, rib, back and skull
I was diagnosed at age 33 after a bone biopsy.
13 years old -- pain in both legs from knees down, crying in pain; continued on and off.
16-17 years old -- left leg collapse, no feeling; leg comes to back normal after time.
Pins and needles in left leg on and off. Leg started collapsing 2-4 times a year from 1978 to 1986. In 1988 I had knee surgery to see what was the problem. Everything ok.
After surgery, collapse started happening again 3-6 times year. Sometimes pins and needles were really bad. I could be walking along, lose the leg and go down on the ground; no warning at all. It would be like having the leg amputated. It is always the left leg. I had a bone scan when I was younger and they ignored the findings. I had a bone biopsy 1994 and found it was true I had melorheostosis. I then found out it was in both legs, feet, hands, right wrist, rib, and in my back and also in my skull. I suffer from stress seizures due to muscle spasms, swelling of hands and feet, stiffness so that it is hard to start move until you get moving a little. I walk with a gait.
Was on didronel 1400mg for 2 years then moved to fosamax. The disease seems to stabilize. I had left foot surgery so I could walk without a cane. It helped. It has been 3 years and the bone is growing back. I am still walking with limp, walking on the side of the foot, but not as bad as before. The leg still collapses, muscle spasms yes. Pain, yes. I go to pain clinic and take fosamax right now. Fosamax does help stabilize the disease in my case.
Been a long road. Pain clinic is a very good idea.
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