My husband goes to Boston Medical Center. It takes weeks to have a tissue ample analyzed for cancer. Amyloid is an extremely complicated, fairly newer condition. Waiting is never easy for anyone. Whatever the results, ask tons of questions, give them room to figure out the plan. My husband as just in the hospital for 5 days because I slacked off on his salt intake. Fluid built up very quickly. His is cardiac related and we had a fright. They will get answers for you.

I am glad that my Amyloidosis center knows how to find out what my type is. They also apparently know how to treat it. Of course the treatment does not work for everyone but at least they can figure out what type it is and try to get a workable treatment. Good luck with your challenge.

Thank you Richard for your suggestions and kind words. I am being followed at Boston Medical Center, best Amyloidosis center in the area, but they don't even want to see me for my yearly check because they don't know my type and therefore can not treat me. It's like being thrown out in a Boston Nor-easter Blizzard. That is how it feels even though intellectually I know you can't treat an unknown entity.
Maryann

Phew. I believe I would let all members of your care team know what's happening, all the time. From lab work, to consults, to any procedures, medications, etc. Leave no stone unturned because you are still in control of what seems to be the uncontrollable! I found the Mayo team was great, but I also felt my home team was trying to stay on top of things as well. Trust your gut on this one, and know what it is telling you to DO and NOT TO DO. Read, stay informed, attend the webinars, and absorb the good will of those that really care!