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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
Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here is an informative link to this disease.
http://www.mayoclinic.org/diseases-conditions/primary-biliary-cirrhosis/basics/definition/con-20029377
My girlfriend has Primary Biliary Cirrhosis, that was discovered when she was being treated by a cardiologist for something else. She was diagnosed around 7 years ago and is doing well with no symptoms. She is seen by gastroenterologist at 3 month intervals, and has labs drawn along with that. She is also on some medications to help keep it stable. She is healthy and active and a grandma/great grandma! I, on the other hand, had Primary Sclerosing Cholangitis, which is also related to autoimmune disease. I would be happy to chat with you and maybe answer some of your concerns or provide you with some information.
Rosemary
Replies to "Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here..."
Jack do you what the pill test is called? Interested Deena
Everybody's body is unique. And everybody will respond differently to some treatments. That is why it is good for you that you are being monitored by your highly qualified physicians. Listen to them. This is new to you, but familiar to them. I remember one of my doctors telling me that you could look at 5 patients with the same liver disease, and each might experience different symptoms. And no one knows how fast or even "if" it will progress! Medical research and advances continue to discover new treatments and medicines. For now, focus on "now" and let your doctors do their doctoring! You are not alone. Rosemary
@jackieg That is amazing!! Thanks for sharing your experience. I'm happy it didn't blow you up - I can relate to those kinds of fears!!
I hope that the information that has been obtained will provide the information that can lead to treatment for you. Rosemary
@mrsdeecee I want to say that I am sorry that you are struggling with your health issues. The fatigue, alone, can be all consuming. thanks for reaching out and offering to encourage others. Rosemary
I am so optimistic since I started reading all these post have a new out look on my life! I felt so alone one of the worst symtoms of pBS is look fine Its finally showing now I gave up 18 months ago and owe thanks to the staff wonderful ladys and all the people that have posted on here Im going to give a fight! I want my life my world back. I have all of you on my side and of course I am on all off your sides I know quite a bit on auto immune nutrition and will be my pleasure to share what I have learned and thank you Rosemary yes I will follow you around the site thanks Once I get a little more familar with it on my phone need to be on PC !and Yes Collene I meant what I said about that lady! Have a great night thank you all for taking my lonliness away so tired hope we all have a pleasant night and sleep well Deena
Fascinating @jackieg. Thanks for describing your experience with the pill cam. Mayo Clinic offers this information about capsule endoscopy http://www.mayoclinic.org/tests-procedures/capsule-endoscopy/basics/definition/prc-20012773, but I also like to hear people's first-hand experiences.
@mrsdeecee, the device used is marketed under the name PillCam (tm) small bowel capsule.
Thank u Rosemary. Haven't gotten results yet but hope its good. If not I want to know that too.
They just called it the pill cam.
Hi @jackieg , I've had you on my mind. You've had so many tests already, and last time we chatted, you were waiting to see your doctor for the results. I hope you have a diagnosis. And a treatment plan.
I remember that for it seemed to take forever to get a firm diagnosis. Getting a name for my disease was almost a relief. Because now there was a treatment plan. Rosemary
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