@linda2114 Hi, Linda. I have gone through pretty much the same thing, but as a male, slightly different.... Anyway, the best advice I can give you is 1) Get a whole genome analysis from a place like Dante Genetics, or Sequencing.com. Or, for a few hundred dollars less, start with Ambry Genetics (ambrygen.com) as I did. 2) Treat your search as a hobby, with major outcomes. Get acquainted with National Institutes of health (NIH.gov). An easy place to start is OMIM.org, or HPO.jax.org. Don't be afraid to sign in. They are very trustworthy people. 3)Ask your doctor to set up a NTproBNP and sFLC. (not the various cheapie and ineffective protein tests.) The sFLC is done by The Bindings Site. Mayo or ARUP or any of the major clinics can do this. My own local doc found an old ARUP test, blocked out the print on it, and typed in the info claiming that I had minimal light and heavy chains protein, in spite of the fact that ARUP had done the test a few years earlier, and found that I had Gelsolin-level "out of range" proteins. So start with a major lab, and if the doc will not help you, change doctors.
Selah.