Hi,
Glad you found NT.
This is a great place to come for answers. You're not alone. I do understand you have reason to be concerned. I would be, too.
I don't have any experience or a clue what's going on with you, so as a non-medical person, I can't advise on that. Sounds pretty scary.
While I do understand your frustration, at least take some comfort in knowing all those tests haven't shown up anything else that you could be dealing with, also. I mean, like tumors, cancers...
I hope you find lots of info here to help you.
Take care...