Name : Dawn D.

E-mail : 

Adult:  43 years old

Location:  Toronto, Ontario Canada

Areas affected:  legs, feet, hands, right wrist, rib, back and skull

Personal History:

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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