@czechmate Well, you asked for it. I have a lot of suggestions for you. First, get ALNYLAM.com on line. Read their stuff on Amyloidosis. They have a program where they will actually send a kit to a doctor who has screwed up your diagnosis. It says something like " You screwed up Karl's diagnosis. Time for you to get it right". It includes lists of symptoms, signs tests, etc. If your neurologist doesn't like it, that's tough. You might as well not go to that person anyway. Second, do you have any doctor you really like and trust? Have them call Mayo-Rochester, or Stanford, or MD Anderson-Houston, and ask the head of the Amyloid department what to do. If you mean Washington State, I know there are no really top rare disease clinics in the state. I lived there several years. Now in Oregon. You can look at NORD.gov or NIH.Gov And talk to Dr. Ron Orlowski at MD Anderson in Houston. You might try Dr. Martha Grogan at Mayo-Rochester, but she is awful busy. Head of the Amyloid Clinic. Some of the videos from her and from others there or at ALNYLAM are worth their weight in gold. Next, download my story, "Amyloid and Old Karl" from httjps://bit.Ly/1w7j4j8 Then start writing your own story. Use mine as a pattern it you wish. The most important thing to do is to have YOUR favorite doctor call Mayo or Anderson, and ask for help. NIH also has a program for Undiagnosed Diseases which might help you. Hang in there.

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