Hypophosphatemia & oncogenic osteomalacia

My condition, hypophosphatemia and oncogenic osteomalcia started about 3 years ago, however, was not diagnosed until six months ago. It started very gradually with body stiffness that over time worsened to bone and muscle pain and weakness. Was examined by all kinds of specialists who really didn't know why I had so much pain just walking, sitting and getting in and out of bed. My Rhematologist had been very puzzeled by some of my blood test results concerning alkaline phosphates being 3 times as high as they should be. Vitamin D testing showed I was severely deficient. Subsequent examination, blood tests and bone biopsy by an Endocrinologist indicated oncogenic osteomalacia and hypophosphatemia being caused by a tumour somewhere in my body. The tumour gives off something that causes my Vitamin D and phosphates to become deficient in turn causing the bone pain and muscle weakness. Subsequent CT scans and PET scan have not located the tumour. Am taking medications that are helping somewhat. Want to communicate with someone who has this condition or recovered from it. Have questions about medications, rehabilitation and generally knowing about their experience.

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