It sounds as if your doctors are on the ball with this one?
Just a 'feeling'. They are curious [and a good and curious doc is always an advocate for YOU!] and not bogged down by the 'systems'.
I have no idea how this will all come out? But I DO have a good feeling that you will get the help you need when you need it and not 'too late'!

Keep a solid faith that your initial docs and subsequent ones all feel the same .... that something's going on and we've got to get to the 'root' of it.

I'd be doing a jig in celebration, but, rite now I can't jig, and if I could? I'd likely fall over? You get the gist of this all I believe.

Keep faith! LEARN! Ask Questions! Have hope! Let us all know how it all comes out? - j