Just diagnosed, my story, and questions

[Guest guest]

Hi everyone,

My name is , and I will be turning 44 in two weeks. This last

Wednesday I received confirmation that I do, in fact, have PSC. In

November of 1991, I ended up in the ER with my liver enzymes going

through the roof, excruciating pain, and jaundice.

I have had problems with cholangitis since 1991, but at the time, my

hepatologist believed it was my Odie sphincter that was causing the

problems. In January 1992, I had an ERCP, which had to be abruptly

aborted due to an immediate onsent of pancreatitis (which landed me in

the hospital for 10 days). So they never were really able to confirm

which duct was the problem. I have several gastros that wanted to

take out my gallbladder, which over the years has been perfectly

healthy (and I still have it), but they found through so much testing

that I made huge cholesterol crystals. I have undergone so many tests

regarding my gallbladder, and liver ultrasounds, continuous monitoring

of my blood, etc. And because I was asymptomatic for so long, I

thought I was fine.... But now I see I was ignorant of what liver

disease is all about.

Around 7 years ago, I began having terrible right flank pain, RQP, and

terrible stomach pain. Since it came and went (sometimes lasting 1/2

hour and other times lasting hours), I didn't do anything about it. I

just thought it was sludge, and I would get over it.

When I couldn't take it anymore, I went back to my hep at UCLA

(wonderful guy - he refused to let any gastros take my gallbladder or

have any other unnecessary procedures). He ordered an MRCP for me,

which provided a definite diagnosis of PSC. I am now undergoing the

rest of the testing, which I am sure is all too familiar to the rest

of you.

What causes me to think that I may be an atypical presentation is that

I don't have any UC/IBD type disorders. Actually, I have been gaining

weight (which is really bad).

I am extremely fatigued, I have an extreme Vitamin D deficiency,

issues with my stool, and terrible GERD, which I know are all part of

this disease.

So now the questions... Have any of you experienced changes in your

wrist bones, shortness of breath, the atypical weight gain,

panic/anxiety attacks, word salad, and insomnia? Because those are

the other issues that I have been dealing with, and I know the liver

can wreak havoc on your system if it is not functioning properly.

I am trying to keep a very positive outlook, and trying to maintain a

sense of humor (because I don't know what I'd do without that), but

boy I sure would love to know if anyone else has experienced any of

the other weird symptoms I am concurrently experiencing.

Thank you so much for taking the time to read my lengthy first post.

With my gratitude, I look forward to your feedback.