Re: so scared

[Guest guest]

I'm so sorry that things are not going well for you right now. I remember the

feelings of despair very well. I don't have any clear cut answers for you on

this but there are others in this group that have so much knowledge. I have

been blown away with the extent of their information and the depth of their

concern and caring for the others.

In my own case, I was diagnosed with PSC in '01. I thought life was over and

prepared for the end but the truth is that I am fine. Life is great and I have

very, very few problems. I have a very full and busy life. PSC is very

unpredictable and that in itself can be so frustrating. It was extremely

difficult for me to deal with the fact that I heard of lot of " I don't know " in

the beginning from the doctors when I would ask questions. I have now accepted

that there isn't a lot known about the reasons behind this disease and I have

learned not to worry so much. The great thing about this group besides the

comfort and the knowledge is the fact that you have people that can relate to

what you are going through and you will see that they are going through the

exact same things. There has been many times that I have read postings and

found the answer to a question that I had.

I realize that I have not really answered your questions but I just wanted to

let you know you are not alone. Good luck and God bless.

>>> " geraldine1965 " 6/15/2007 5:33 AM >>>

This is all very new and

frightening to me and I feel so alone.

Thanks for listening.

Gez~

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[Guest guest]

Dear Gez,I'm sorry for your possible diagnosis but glad you have found us.They will know more after the ERCP.When my son was diagnosed in 04 we were scared and confused too. This group was a godsend. Out of this group came a foundation calledPSC Partners Seeking a Cure. If you go to the website, www.pscpartners.orgthere is a brochure you can look at called "Living with PSC". There is also a FAQ section and tons of informationin the back issues of the newsletters. Try to stay calm, educating yourself once you have a definite diagnosis will help you to cope and get back to the business of living life. You will go forward.All my best to you,Lee mother of Bill 24 UC/PSC 04 J-pouch 05 Hi to everyone here - I am a new member and very scared and confused. My consultant has arranged an ERCP examination- he states that I could either have an underlying mild PSC lesion or a mild auto-immune cholangiopathy.I have read some very negative things on the internet about these diseases and my every waking moment is filled with thoughts of " I haven't got long to live" I dont know how to go forward - I