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Paraganglioma (Help)

Posts: 3
Joined: Oct 2011

Hi my name is Jonathan. I have only recently been diagnosed with metastatic paraganglioma. I have mets in my orbit,humerus,femur and abdomen. I have one all my work up and I stil have no answers. The healthcare system in Ireland is pretty poor and have not even given me a treatment plan or anything. I have no symptoms and I feel fit and healthy irespective of my diagnosis. I am an Mibg candidate but I do not think any hospitals in Ireland cater for this. I would love answers but my consultants are not even returning my calls. They discharged me from hospital last week and said that they will contact me. Is this normal?