Hi Charles. I know how you feel. Pretty sure I have the same thing (going for testing this week to confirm). Apparently it's a very rare disease which makes it difficult to find any real answers on it. I did find some great resources that I think may help you (they helped me a lot):
https://www.youtube.com/channel/UCLfudB_bd3b_F170VRsCGng
www.AmyloidosisSupport.org
Best regards,
Brett
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Brett Temple
Project Manager
Sarasota FL
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