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Primary Biliary Cholangitis: I would like to connect with others
Autoimmune Diseases | Last Active: Feb 16, 2020 | Replies (46)Comment receiving replies
I have a pancreatic specialist in NY Prebyterian been trying to contact I went into my records the PA reveiwed then not doctor? She called to tell me my liver specialist had wrong diagnosis. I want to know the extent of pancreas damage their was a stone in their for 5 years the pain was horrible no one believed me in medical community. I was thinking about going through a traditional chinese medical doctor I did study it till broke my leg in 2010 seems no doctor in versed in PBC I tested for 7 years every 3 months no treatment no anserws I do have good ins a multi plan if you know or anyone of PBC doctor in New York area please refer. What do you think of liver foundations its on Broadway NYC for referral ? It is an understudied disease they caught it early summer 2009 I had no symptoms till stone was pushed into pancreas during a EUS? Every GI I seen was cold hearted and focus on pancreas would tell me going to die of most aggressive cancer no cure least common and have dilations of intra and extra bile ducts.Thank you for asking no one ask me how I am doing what so ever? I am frighten to test been 18 months the PA thinks she saw a lesion on pancreatic head thats when I stopped exactly where they said I would get cancer? Chinese medicine concentrates on calming the shen (mind) If you were me what would be your game plan out of curiosity I will not hold you too your opinion ! Have a wonderful Day!
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No doctors as off yet! Im going to look on PBC web site and see if I can find a doc that specializes in PBC because it involves liver biles ducts my case pancreas and could lead to kidneys? In advance could effect other systems , Last time I went to GI around the block, I live in medical central their are 3 hospitals in a 5 mile radius the cold hearted doctor was out he had a fill in dr a foreign dr could not understand I wanted my blood ran basic,liver profile ect he told me to take my pants off which I found odd? I thought he wanted to check my pancreas or liver for tenderness? He proceeded to put his finger up my anus without gloves I honestly felt violated my issues are in the right upper quad?? And did not give me a script for blood work!! Now you know why I am hesitant ha ha ha! That was about a year ago! Pancreatic specialist no reply from NYP?
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Deena, I can understand why you are frightened about testing. My question is this: Is it possible that the PBC is being ignored because the pancreatic issue is a higher priority? I mean, PBC is generally a chronic condition. I don't know what you mean by saying you saw a "cold hearted" GI. But perhaps he/she just has a terrible bedside manner? If it were me, I think I would want anther professional opinion of what to do. Then I would move forward from there. Be patient! Medical appointments and procedures do not happen fast!!! I hope you can find the level of care that you deserve. Rosemary