@oldkarl - A fellow data cruncher! How fascinating! Amyloidosis is one of the things I actually asked about as a long shot (serum and urine immunofixation came back negative). I particularly empathized with your mention of the frequent "it's all in your head," or, likely because I'm a woman "anxiety can cause XXXX." How did you keep positive in the face of constant skepticism and doubt? What made you so sure it WASN'T something psychological?

I also enjoyed your elephant in the room story. I think I mentioned in my post above how surprised I was once I acquired my medical records and reports to see so many "abnormalities" noted by the radiologists that were never mentioned to me, and I suspect were overlooked because of that "tunnel vision" you talked about. It's interesting to see in hindsight some precursors or indications of future problems show up.

And you're right, now that I've completed my spreadsheet with all my values and testing charted so it can easily be reviewed without a million pieces of paper I've been passing it out to every doctor I can, but I don't know if any of them are actually using it. I think it at least helps me ask better questions, which I hope would in turn mean increased likelihood of diagnosis, but I may not be the best poster child since I still don't have answers. It is also helpful not to be digging through boxes or searching through e-mails to find a specific test or something.

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