@beckyoutlaw1115 Hi, Becky. Yes, it's a tough road to get a diagnosis in the Amy wilderness. But it is mostly up to you. (1) your doctor will tell you that you cannot possibly have any of it. It is too rare. Tell the doc to help you or stand aside. Being rare does not preclude you having the disorder. Help you by getting you the sFLC and 24-hour tests. The doc must call ALNYLAM.com to get you into their DNA program. The doc must register the doc's and clinic's name, and yours, with ALNYLAM. Read their RED ALERT Amyloidosis Warnings. https://www.ALNYLAM.com Do not let the pros defend the disease against the treatment. That seems to be the protocol you have to fight against.
(2) Call your favorite upper level Amy Center, whether Mayo, Mass General, Memorial Sloan Kettering, Fred Hutchinson, Stanford, City of Hope,.... to ask an expert (it should be a hematologist with good Amy experience) how to handle your case and get some guidance about the next steps.
(3) Learn all you can. Everything you will need is online now. Do an Internet search for Amyloidosis Foundation, and read their site, especially the descriptions and definitions. Same for Cancer Net
(4)Go to the various Center sites and put in a search for Amyloidosis. Watch the videos from the sites. Mayo has a great selection in their Grand Rounds videos, especially the ones titled "All the (patient or doctor) needs to know about Amyloidosis".
(5) If you can, make an appointment to go to one of the centers for a conflab. Either the center or some very top lab must do some intricate blood work, especially by Atom Force Microscope, to see exactly what you have. Biopsies are now generally rated old school.
(6) Start your own write-up of your situation. If you like, take a look at mine on the Internet. It is free, and I don't sell anything. https://bit.Ly/1w7j4j8
Well, that should get you started. I will be anxious to hear how your situation goes.

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