Kathy
I don't know anything about your disease, but I am willing to listen. I do , however, understand your loneliness. My 11 1/2 year old daughter was diagnosed with osteomyelitis (bone infection) in her distal femur. After a biopsy was performed, they were unable to culture anything, therefore, the germ causing the infection is unknown. She has been on heavy doses of meds. intravenously for six weeks. The infection hasn't improved. In about 10 days the doc will rebiopsy in a different area of her femur and try again. They didn't find cancer in the first biopsy so I pray that they don't find any in the second. My thoughts and prayers will be with you. Have you asked the doc. or hospital if there are any support groups in your area for rare diseases. This web site might have some info. for you. I think its rarediseases.org or perhaps rarediseases.com. You might even try orphandiseases.org or .com. Kathy