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@oldkarl

No, Danybe good1, I'm not a doc. I just have something in I my body that we have not been able to pin down, so we keep working. You can read my story at https://bit.Ly/1w7j4j8 What I have done, anyone can do. Just start writing down everything you can about his body medicals, in as much medical detail as you can get from the paperwork the docs give you, and make sure it is accurate, not just from memory.I started this search when I was about 16, and am still working on it.In any case, the good docs will appreciate my efforts. If the medico does not appreciate that I am trying to find the truth, I find another doc immediately. I don't claim to know all that is happening, but I do know some. Thanks. And Casey, don't give up. You never know when some clue will pop in that makes sense out of the whole thing. How about the serum free light chain (sFLC). Mayo does these well. They can also put your samples through an atom force microscope Actually, the sFLC is probably the top of the relatively inexpensive tests, followed by the ALNYLAMACT.com genetics for hATTR and other Amy, which your doctor can arrange with a phone call.

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Replies to "No, Danybe good1, I'm not a doc. I just have something in I my body that..."

Thank you so much for your response. It's comforting to know we aren't crazy in continuing our search for answers! We have an appointment at mayo in Jacksonville is 2 weeks so hopefully we can get to the bottom of this

Hi Casey, @casey0595,

I wanted to follow-up and ask whether all went well at your husband's appointment? I sincerely hope so, and if you wish do let us know if you have any comments or concerns; we'd love to hear back from you.