@feb ... Kathy, sounds to me that you have what is known by a bunch of different names besides Finnish Amyloidosis. I typically use Gelsolin (GSN - 2934), Meretoja's, or other names. It is part of Melanoma, a cancer. Look it up in Wikipedia or Google. It is sometimes known as FKTN (Limb Girdle Muscular Dystrophy- LGMD2m LGMDc4). It is systematic, meaning it attacks every cell in the body by making scrap of the Actin web around the cell. It i slow, but deadly. It eventually gets into the heart and gives it arrythmia, sometimes CPVT or other problems. I have had 53 cancer surgeries and/or treatments, and am looking at more ahead. Most doctors are too lazy to do the diagnostic workup required. It is basically a protein problem. It is easy to spot, if you know the signs. University of Helsinki and Mayo (Martha Grogan) have good "you-tubes" on the diagnosis. So do Ambry, Sequencing.com, Nebular, . . . . I got my first help toward the diagnosis from Ambry and Alnylam. It is not nearly as rare as some naïve doctors pretend. My first sign was having my tonsils removed at age 4. Then esophageal cancers, prostate, thyroid, kidney, heart, lung nodules, Lissencephaly, inguinal hernias, splenomegaly, perianal bloody rash, red and swollen eyelids and cheek bones just below eyes, cracking teeth, CALR(systemic polymorphic fragile capillaries), burning teeth, mouth and eye sores, skin lesions, polydactyl genes in the genomes, surgeries on shoulders, hips, knees, ankles, wrists. Proteinuria from NTproBNP lab tests (NOT! proBNP. That test is useless). Foam on urine in toilet, bloody urine, about 3 cm. deep, alternating constipation and diarrhea,. Chronic Lymphocytic Leukemia, Anemia, Platelet 4, skin lesions al over shoulders and arms down to wrists. Most especially, the existence of the GSN - Amyloidosis - Myeloma-genes, and perhaps Walker-Warburg, and FKTN And the heart. Any heart wall over 12 thickness, especially closer to 19. And any arrythmia oldkarl

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