Hi, Michele. I have great feeling for your daughter, as I have been through much of the same. I do not for a moment think she has the same stuff I do, but the search is much the same. My search for dx has lasted about 50 years. The trick for dx (diagnosis) is to find a series of tests which will steer you on to the right path, and on the road to the proper dx. I.E., I have been tested for, and then ruled out, fibromyalgia, lymphoma, chronic fatigue, and 20 or 30 other diseases of all kinds, from polio to malnutritions. Time after time, some doctor or nurse has said "Eureka!" Then later, they said, "Ooops, sorry....." Finally, 18 months ago, as a sort of off-hand remark, a lab tech with almost no experience happened to say "Ever have your protein tested?" Well, that was the start, and in the intervening time I have my protein, kidneys, heart and everything else tested and retested, and I think I have at least part of the truth. Systemic, primary, amyloidosis of some sort. There is still more testing to do, but I feel good about the start. So my suggestion sounds easy. Ask everyone you see. Start with a basic test of some system(s) that is going bad. Mine were liver, kidney, pancreas, and cardiac. After each test, make lists of what is ruled out, what is ruled possible, and what should come next. Organize...Organize... her medical work. She must take control, and lead the doc around by the ring in the nose. Because I have many of the same symptoms, I would start with SERUM Free Light Chain Assay, 24-hour urine collection and test. If the sFLC returns negative for kappa and lambda proteins, and the urine does the same, that pretty much rules out any serious problems in that area. Then, go to testing for various anemias, etc. Then chronic infections. And so on. At each junction, make decisions based on science, not folk Medicine. That is for later. She can gain control over her own life only if she is willing to make the decisions.