New things

[Guest guest]

Hello all, As you may or may not know I am pretty new to PSC, got diagnosed this year and I am having my first ERCP on June 2nd. I don't know what stage I am at, but I do know that I have pain almost all of the time. The test for UC said I was fine, but I do have Celiac/Sprue disease, which is an autoimmune disease and it isn't helping matters much. I have applied for permanent ssi disability because I am tired and just feel bad all the time. I get scared because it seems to me like I should be having more good days then I am. Did anyone else start out this way, and do you have any suggests on how to boost my energy and give me a better quality of life? Also, I noticed that most of you have UC, is this something that I should worry about developing over time, or would I already have it? I have so many questions and my dr. is a Kaiser Gastric dr.

and he doesn't seem to get it. He claims that PSC doesn't have pain and can't figure out what is wrong with me. Would you suggest I find a hepatologist? I will drive wherever I need to in order to get some real answers, when you are lost and confused, I find it easy to be scared as well. Thank you, hope to hear back soon. regards brandi celiac's disease 2002 and PSC 2008