@sunshine49 Aw, for Cryin' Out Loud. Sounds like we have some more doctors to educate. Sorry about all the nonsense you have been put through, but at the same time, I am not too surprised. You are exhibiting a large stack of the symptoms of Amyloidosis of some sort, probably Light Chain (AL), Gelsolin (AGel), Cystatin-C (ACys) or perhaps even Multiple Myeloma. Since there are over a thousand forms, it is pretty difficult to pin down the definite dX. So here are the initial tests for you. You can get them from MayoClinic.org in their Grand Rounds Video Series. Two of the best Videos for your needs are What the Doctor Needs to Know; and "What the Patient Needs To Know..." about Amyoidosis. The tests: 1. SERUM (not plasma or whole blood) FreeLiteChain(c) Assay from Bindings UK, available through most major clinics, and especially through ARUP Labs in Salt Lake City. If your sFLC reads 1.6 mg/deciliter or higher, you have the first danger signal. 2. 24-hr urine/protein, more than 0.5 g/day. Most local labs of any quality can do this, or Mayo or whatever. 3. Send Mayo a sample and have them test it for identification of misfolded protein. 4. Well, there are many more, but most of them will simply echo what you said in your letter. And read my own story called "Amyloidosis Version 12" as found at https://bit.Ly/1w7j4j8 Take a copy of it, or this URL, to your doctor. And also read the symptoms of amyloidosis hATTR from Alnylam.com.