Primary Sclerosing Cholangitis (PSC) - Online Support Group
We are patients living with primary sclerosing cholangitis (PSC), here for you!
The battle
Hey Everyone! About 7 years ago I went partying with some friends and woke up the next morning jaundiced. Because of lapses in healthcare coverage, I was not able to see a doctor for a couple of months. Blood tests, a biopsy, etc tests were completed. I was diagnosed in late 2004 with what my doctor described as "most similar to" Auto-immune Hepatitis. He started me on prednisone to bring my enzymes down, and for the most part it worked. After 7 years, several lapses in healthcare coverage, and 5 doctors later, I think I may be getting the help I need, though my doctor doesn't seem to think there is much going on. Along the way, one of the doctors did get me off prednisone and put me on azithioprene and ursodiol. Then 4 months ago, my new doctor took me off all medications to "see what will happen". I have since been forwarded off to a new doctor because "my case is so unique" (doctor speak for I don't know what the heck is wrong with you).
My most recent biopsy results said the slides looked most like primary sclerosing cholangitis, so that is why I am here. I need help, and I am tired of doctor's "practicing" medicine on me. Is there anything I can eat that will help quiet this thing down? Any herbal supplements that can help? Or do I just need to get on a transplant list? From what I read today, I am more scared than I have been. 10 years before I have to have a transplant? Does that mean I have 3 years left? (this started in 2004) Other than the jaundice at the beginning and now abnormally high enzymes, I have had no similar symptoms. I don't itch, no fatigue, etc. Not sure what else I can do. Diet is the most direct thing I can control. Thanks for any help/suggestions.
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Replies to This Discussion
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Permalink Reply by Mona on -
Email me offline: monavalentine@yahoo.com
Introduce yourself so I don't discard and trust.
Mona
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Permalink Reply by Stacy on -
Hi Mona,
I saw you mentioned you did a detox? What exactly did you do for that?
Mona said:Email me offline: monavalentine@yahoo.com
Introduce yourself so I don't discard and trust.
Mona
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Permalink Reply by Mona on
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Email me offline. I will tell you what I do. I am not a doctor and we are not all alike. However, there are many things you can do. My doctors are all on-board and love my natural nature. There are also people on here that LOVE to criticize things that are NOT pharmaceutical.
See my email above.
Mona
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