Hi. From my perspective, it indeed sounds like amyloidosis with kidney involvement . I agree with /miriam - you have a center of expertise with the NAC and they are the ones who can diagnose for certain. My own amyloidosis was confirmed roughly 1 year ago at Seattle Cancer Care Alliance - approximately 2 months after i had begun experiencing serious swelling of my feet, ankles and calves. My primary care physician was quite stumped with everything, but did send me to see a nephrologist. She indicated I was experiencing chronic kidney disease or something, but then a blood test triggered something else in her that led her to think I had a high probability of multiple myeloma. I had a kidney biopsy and a bone biopsy, and they found a high count of plasma cells leading to misfolded proteins. I immediately contacted Seattle Cancer Care, and one of their leading hemetologists. He confirmed my case as AL Amyloidosis - and NOT MM. In fact, they did a second bone biopsy and found the 1st biopsy in error in terms of the % of plasma cells involved.
During my CyborD treatments, I experienced significant diahhrea problems, reduced BP and dehydration. My AL Amy primarily affects my kidneys, but also my heart amd nervous system. I was tested via endoscopy, colonoscopy and so on for GI tract involvement (common with Amy) but was told it was not the case. I would get to the NAC asap and see the experts there. The amyloid deposits could indeed be causing all the issues you list. During my 4 1/2 cycles of CyborD, I had to skip at least 3 or 4 of the weekly infusions because of the side effects, an infection, and finally pneumonia. I went to the ER at the hospital at least twice, and was hospitalized for pneumonia one time, and then hospitalized again about two weeks after that episode because of dehyf=dration, BP falling, and the doctors just wanted to be cautious.
