Have just completed a full GI workup including colonscopy with mulptiple biopsies /upper endoscopy with biopsies all negative. Cat Scan blood work including ANA CRP workup for ulcerative colitis with one part of it having an "equivical range " Ultrasound of Gallbladder Liver etc. Still having GI symptons cramping bloating constipation alternating with occasional diarrhea.Feeling full early apetite less. Began workup for that and also Fatigue. Could This be Amyliod which isnt seen on the regular biopsies done during the endoscopies, What should I do to rule this out. Thank-you
I agree with Lori707, amyloid is quite uncommon and there are specialists that focus just on treating amyloid patients who you could consider getting a second opinion with.
Dr.Belinda Ng is a cardiologist trained in Amyloidosis. Dr. Ng is the first physician formally trained in Amyloidosis and is a cardiologist trained at Northwestern Memorial Hospital in Chicago, IL. She has performed significant clinical research on amyloidosis at Boston University Medical Center and has seen hundreds of amyloid patients. She's currently practicing in LA, CA. She could advise on the right tests to consider this diagnosis.
I myself just had biopsies of my colon and esophogus for amyloid deposits which came out negative. But it's like looking for a needle in a haystack.
Wondering why you're asking about amyloidosis since it's so rare. Also, did they use congo red stain on the tissues taken? That's very important. Your tissue samples have to stay at the pathology lab for 2 yrs. You might want to consider having them sent to the Mayo Clinic for review and they can return the samples to you. I think it costs $45. My mother had that done. The Mayo Clinic is one of the main places that specialize in amyloidosis as does the Amyloid Boston Clinic in Mass.
There are many reasons for your symtoms that you're explaining.
Waiting for your reply.
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