Originally Posted by DavidHC

It was mostly pursuing a list of most likely differential diagnoses. My neurologist thought it a possibility for good reason, as did I. I have many of the symptoms of amyloidosis and not just SFN.

They took biopsies from the entire GI tract, stomach, small intestine, large intestine and rectum. I believe you have the last in mind. Yes, that's a good location to biopsy, though the best way is to biopsy the organ involved, if you already know that. But I had no obvious organ involvement. I also had my skin punch biopsy sample tested/stained with Congo red, and nothing.

You can also do a fat bad biopsy or a sural nerve biopsy. But if you have, say, kidney involvement, then you biopsy the kidney which is as precise as it gets. But I didn't have any such obvious involvement.

Biopsy samples of the GI tract are very standard during a colonoscopy or gastroscopy, so that shouldn't be an issue. There are also urine and serum tests to check for certain markers.




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?