[QUOTE=DavidHC;1220112]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.

Hi David,

Can I ask what made you pursue the amyloidosis test. I have read about this myself and wondered whether it would be worth pursuing. Frankly I'd have every test going if it wasn't such a fight to get consultants to do it.
Sorry if you have said this before. Was the sample taken for amyloidosis in the GI only? Ive read that the inside of the bum passage is a key place to check as well as the fat pad biopsy. What made them yet for this or did you suggest it and make it happen so to speak?