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@oldkarl

@jilljohnson61401 Are you still on? I am still around, but still impatiently waiting and watching. Mayo, B&W and the other centers make a big deal out of getting the diagnosis as quickly as possible to fill out the treatment windows. Then the (particularly) local docs take their sweet time about doing the testing that will be required. I do not buy that practice for a moment. But in the meantime, there is more that can be done. I have taken the Table 6-1 from of the MA Gertz book, “Amyloidosis – Diagnosis and Treatment”, and adapted and filled it out in my own case, including my own stuff. And I have added the ALNYLAM Pharmaceuticals “Red Flag Warnings for hATTR”, and a few other matters I have picked up from various sources. You could do the same, and it is time consuming and educational. But there is a possibility here. I am willing to make this available to you and anyone else through Dropbox.com as a PDF file, if you want it. I have cut out much of the too-personal stuff. And one of the group leaders must say it is all right to do that before I will go ahead. I think it would be very educational for any form of Amy, and you can adapt everything to your own needs. It is a lot of detail, but it is available if some leader gives the word. Doing it this way uses less board room and protects from viruses. Leaders?

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Replies to "@Jilljohnson61401 Are you still on? I am still around, but still impatiently waiting and watching. Mayo,..."

Hello @oldkarl,

We do not prohibit members from exchanging information, we just ask that you do it via the private message function. If you, or any other member, would like to share the materials you speak of, we would just encourage you to share how to contact each other and your contact information by private message. This is for member protection of private information from spammers and unwanted solicitations from outside sources.

Dr. Gertz is an extremely highly regarded Mayo Clinic hematologist and considered a pioneer in a lot of areas. I am sure his book has fantastic information!

Still here @oldkarl . Thanks for all of your work, but I have to tell you I get a bit leery opening files from folks I really don’t know. I work at a college and we have received so many trainings regarding viruses and files. I go to Mayo in Sept for more tests. I have a lung test at home in a couple of weeks. If my doctor isn’t overly worried, then I am not too worried. I take this disease seriously, but I do not take it as an automatic death sentence. I am in great health and great hands with my local care team and my Mayo care team, not to mention great support from my family and friends. I think I am one of the few lucky ones that was dx way before any deposition. I will definitely check out table 6 from Dr. Gertz’s book. Thanks again for the heads up.

Sure, Jill. A couple things. It is a pdf file, and it is pretty hard to put a virus in one of those. And Dropbox checks each piece. The book is free; a listing of the symptoms shown by the Mayo staff and ALNYLAM Pharmaceuticals, as well as tracking my own history beside those lists. I have had that site (Dropbox) for a few years, and never had a problem either way. I usually put the address as https://bit.ly/2fhYH0E. I do not know why I forgot the “s” this time.