It took almost three years of visiting our family Dr and getting referrals to specialist for the various symptoms my spouse was presenting with over this time. Nobody connected the dots and only focused on the individual symptom. Diagnosis of Amyloidosis requires particular biopsies. If no one connects the various symptoms then the disease goes undiagnosed. It was only when my spouse had full body edema and we went to emergency that a well informed cardiologist treating my partners heart failure caused by the edema pressure that a suspicion of amyloidosis was considered. A biopsy was done and several weeks later the diagnosis of AL-Amyloidosis. Devastation but, enlightenment. Now we knew what we were dealing with. It takes a long time to get a diagnosis because it is a rare disease and most Dr do not know of it.

It’s a rare disease and they don’t know what they’re looking for. The symptoms are so obscure that it could be anything. It took 10 months for my diagnosis.