Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 Hi, My name is Cindy and I am 35 years old and on April 14, 2006 I was diagosed with Ulterative Colitis and on November 14, 2006 I was diagosed with PSC. I am going through the emotions you deal with when you have a life condition (I refer to it as a condition because I have a hard time saying the " d " word). I really don't have alot of symtoms just some " itching " from time to time. Everything I have read regarding PSC all seem so negative I realize that there is not alot of research on PSC so it seems like all you hear the worse cases. Can someone tell me how long they have had PSC. Hope to hear from you soon. Have a Happy New Year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2006 Report Share Posted December 28, 2006 Hi Cindy, Like Larry, I am happy that you found us even though I wish you wouldn't need to look for us. There are many caring and knowledgable people here who will try to help you in any way possible. I have had PSC at least since 2001 when I had strange results at a routine blood test. I am one of the few lucky ones that does not have UC. Since I was diagnosed in 2003 I have been symptomatic once, after which I had a few ERCPs where stents were inserted and removed and later my gallbladder was removed. I am in good health at the moment, I take vitamin A, D, E, K and high dose ursodeoxycholic acid (UDCA). If you are in the mood, look at this link, it really helped me to understand what PSC is and what can be done. http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease4 & organ=3 & disease=30 & lang_id=1 Welcome to our group and a healthy new year, Chaim Boermeester, 38, PSC 2003, Israel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2006 Report Share Posted December 28, 2006 Hi Cindy, I was diagnosed with PSC 2 years ago and I think I had PSC since YEAR 1999 or 2000 but never knew until I went to a specialists for liver diseases. I have been pretty lucky myself with not having many symptoms so far. I have the PSC that is in the inner bile ducts or the small duct PSC. If you have this disease from what I understand this is the one version that you want to have. I do not know which version you have? I am taking URSO to keep the bile juice thin so it can flow through the bile ducts easier. I take 3 pills a day 500mg each and this seems to really work for me. Dave. St.louis/ PSC 2004 From: [mailto: ] On Behalf Of shoesicecream Sent: Wednesday, December 27, 2006 9:30 PM To: Subject: New to the group Hi, My name is Cindy and I am 35 years old and on April 14, 2006 I was diagosed with Ulterative Colitis and on November 14, 2006 I was diagosed with PSC. I am going through the emotions you deal with when you have a life condition (I refer to it as a condition because I have a hard time saying the " d " word). I really don't have alot of symtoms just some " itching " from time to time. Everything I have read regarding PSC all seem so negative I realize that there is not alot of research on PSC so it seems like all you hear the worse cases. Can someone tell me how long they have had PSC. Hope to hear from you soon. Have a Happy New Year. This email is intended only for the person or entity to which it is addressed and may contain confidential, proprietary and/or privileged material. Any review, distribution, reliance on, or other use of this information by persons or entities other than the intended recipient is prohibited. If you receive this message in error, please immediately notify the sender and delete it and all copies of it from your system. Thank You Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Cindy PSC is a disease that is weird. Some people have minimal symptoms and some run the range of crap. Suggestions. Get a real good patient advocate dr. You may need to shop around but they can be found. Learn your insurance policy. Keep records of everything. When you go to the dr have questions qritten down in advance so you don't leave and realize you did not ask the important stuff cause you were so over welmed. When you talk to insurance people write down what they say and read it back to them. Get referrals for specialists and keep the papers as sooner or later your insurance company will give you grief. Get a good GI Dr and find out what he knows about PSC. It is a disease that is not real common so some drs will just shake their head at you because the only thing they remember is the little note in a book somewhere that it is a bad thing to have. My son was diagnosed at 11 and I can't tell you how many drs gave us the oh I am so sorry routine til we found the right team. You did not mention what part of the country you are from. There are some great centers out there in most parts of the world. Good luck and keep the faith. Martishoesicecream wrote: Hi,My name is Cindy and I am 35 years old and on April 14, 2006 I was diagosed with Ulterative Colitis and on November 14, 2006 I was diagosed with PSC. I am going through the emotions you deal with when you have a life condition (I refer to it as a condition because I have a hard time saying the "d" word). I really don't have alot of symtoms just some "itching" from time to time. Everything I have read regarding PSC all seem so negative I realize that there is not alot of research on PSC so it seems like all you hear the worse cases. Can someone tell me how long they have had PSC. Hope to hear from you soon. Have a Happy New Year. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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