I've just got my diagnosis of AL amyloidosis today after having a bunch of testing and two biopsies done. I have so many questions, I don't even know where to begin. I am in the Green Bay area and my doctor is sending me to her colleague in Milwaukee to get a second opinion to make sure I don't need any radiation in the area that I had my amyloidosis removed from. I had a skin lesion pop up out of the blue. It was only a spot on my skin and the entire thing was removed. All the tests came back negative but my urine shows way excessive amounts of protein and my doctor doesn't understand why. She said she's never seen Cutaneous Amyloidosis (which is what I was found to have initially) and so she wants me to go see this other doctor in Milwaukee. She also ordered a cardiac MRI and a biopsy of fat tissue just to be sure there are no amyloids hiding anywhere that they missed with any of the other imaging that was done.

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