At this point, as I see it, you have one thing you really need to do. Have one of the companies do a whole genome analysis on you, sequencing or whatever. Ambrygen.com will usually do a partial free, and its a good place to start. Looks to me that you have at least Gelsolin, and probably FKTN. Classic symptoms for both. And if you are tested positive for FKTN, you also have Gelsolin. I have both since birth.