Hi, it certainly does help chatting to others who are going through the same trials. I had 2 CT scans and lots of blood tests. Then I was told that a biopsy was definitely needed to confirm MP and eliminate anything else nasty. Eg lymphoma . I had key hole and while doing the biopsy the surgeon checked my internals pretty well. I don’t know about CgA. They tell me MP is not a fatal disease, it’s an inflammation of the messentry….An immune disease, they don’t know much about. I continue to have regular blood tests. I have only been guided by the doctors from the beginning, even though they are limited in knowledge.
You said the ‘risks outweigh the benefit ‘ so not sure what your doctor is thinking in this regard. 🙏