Diagnoses of PBC not making sense anymore

@peabody88 Hi, fellow data cruncher. First, very happy to see your response, and I know your feelings well. And I know my concerns are not all in my head because the lab and observation reports disclose the awful truth. The sFLC(C) assay says I have excess light chain protein, almost double the reference range for Kappa protein. My 24 hour protein collection showed 1.225 grams of protein in the day of urine collection, the RR (Reference Range} tops out at .5. Dr. Jeanette Nee of Las Vegas Sunrise and other Cardiologists have put 24 stents in my heart and mammary arteries over the years, and Insurance has paid it without question. My arms and legs and forehead are covered with macular skin rash, looks like #####. My toes and eyelids turn purple or black. My nails are torn and brittle. My pancreas, heart, lungs, thyroid, liver, prostate, bladder, spleen are all enlarged. Cancer in my Thyroid. Cancer in my prostate. Samaritan imagery shows "amorphous white matter deposit in cerebrum cortex." That is just the beginning. But congratulations on building your spreadsheet. That spreadsheet will be your best answer to the nonsense of "I did not see anything unusual."

@peabody No, I think you made your question quite clear. That is, how to stay on course toward a clean diagnosis when your doc says "It's all in your head." And I answered the only way I know in my case or your case. Make sure you have the right information done jproperly, so you can say to your doctor, "OK, how about this?" My clinic refuses to put the numbers in the reports on ventricle wall thickness, etc. So those tests are wasted. In my case, doctors at Mayo and OHSU and Willamette Samaritan (who don't recognize the wall thickness as being important) all said, "We don't see anything that indicates Amyloidosis. It's all in your head." So, now, with my record written out, especially with the list of THEIR lab reports and the observations of other medical people, I say to the Mayo and OHSU and Willamette Samaritan Doctors, "But what about ............ It shows my internal organs are all enlarged, and my sFLC shows my serum protein is double the Reference Range, and .........." At that point I can honestly feel I am in control. So if the cheapskate doctors refuse to look at their own labs, I at least know that i am right and they are wrong. And I can laugh at them and easily say, "Look, you naive TV doctor, your own labs tell me I have..... I may have to change doctors when my own docs will not deal honestly with their own lab reports. I have over 100 lab and image reports that all point to Hereditary Gelsolin Amyloidosis, yet some of my medics still deny it. Then I come on this Mayo clinic page and spill my guts. I do not risk staking anything on just my own opinion. The stakes are too high for that, and the medics are just smart enough to not let me get away with that. It is something our government is trying to learn but is not. Truth is truth, no matter how you try to spin it, which is what many docs seem not to learn in med school. So make certain you have your facts straight. And put our stuff on this page when you can. I do expect to die within a couple years because of the failure of these medical systems to read the )(&*^ reports and follow through. At 78, I know they will not take me seriously anyway, especially at Mayo, WS and OHSU.