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nicoleny (@nicoleny)

Undiagnosed for 3 years

Digestive Health | Last Active: Sep 4, 2018 | Replies (22)

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@stacey2

Hi. I also have the same dull ache/pain under left ribcage . Have had several tests. The only result was "cysts on pancreas" which really freaked me out. Dr gave me another prescription for rifaxamin ( 3rd time) and said i might need to have them removed. Surgery on the pancreas seems pretty scary. Im not sure i want to keep taking rifaxamin.

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Replies to "Hi. I also have the same dull ache/pain under left ribcage . Have had several tests...."

@nicoleny One of the earliest organs to be invaded by mis-folded proteins, especially in autoimmune Amyloidosis is the pancreas. I had a cyst on mine for a time, but it went away eventually, and the whole pancreas simply grew about 15%. Suggest your doc order a sFLC(c)Bindings assay. Any result over 1.4 mG/serum deciliter is pointing a good direction to look, and anything over 2.0 mG/deciliter says you have some mutation of the disease of misfolded protein in your body. Mayo and all class 1-AAA clinics and NIH have lots of stuff on it.

@oldkarl thank you for the feedback. I am surprised the pancreas specialist I saw in Boston didn't mention that. Would there be other symptoms? What type of test is it – invasive? blood test? What type of doctor do you see for that? How did they find it on you? Thank you so much.

@stacey2 My husband by accident found from a virtual colonoscopy.. basically a colonscopy done with a fluoroscope… that he had a tumor on his pancreas. They thought it was a cyst. They did surgery and they took about half of his pancreas. It was cancer. He recovered well. He is diabetic, but that is better than dying from cancer. Funny.. his doctor said he does not know why he ordered the virtual colonoscopy… he usually just performs another regular cooonscopy in a few months. My husband had failed to clean out for the colonoscopy. His doctor said rarely is there symptoms of this type of cancer tumor. It is usually detected in an autopsy. I have forgotten the name of the type of tumor.

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