There have been a few development recently. Perhaps the most important/biggest development is that I don’t seem to have Amyloidosis. I’ve now seen one of the world’s foremost authorities, and he tested me for all sorts of genetic possibilities, including TTR, as well as for acquired possibilities. For example, no Bence Jones, and more generally no evidence in urine or blood.

Meanwhile, I had a colonoscopy and gastroscopy, with samples taken from all over the GI, top to bottom, for biopsy. No evidence of amyloid, H. Pylori, Celiac (though I’ve been off gluten for over a year now with the exception of two slips, so the negative result mean nothing), and a few other things. At this point a fat pad biopsy is thought to be unnecessary, as well as a sural nerve biopsy since I have no evidence of motor involvement. So if I do have Amyloidosis, then it’s hiding extremely well and is not in my liver, lungs, heart, kidneys or GI. This seems highly unlikely. So I’m happy to cross that off the list. I was quite thorough, pushed for all the tests and nothing showed up.