What was your diagnosis process like?

How long did it take you to get a final Dx? Did they have trouble with differential Dx between several possible diseases? Did you have any Dx that turned out to be wrong along the way before getting your final Dx? Is it common for this to take weeks or months or longer? How quickly did your Dx process proceed?

It started like in 2006 with a crohns Dx. I also had elevated blood work. 2 years ago, I had itching and an mrcp and unclear PSC diagnosis last week I had an ERCP to finally get the diagnosis. So it’s been like 9 years without a true diagnosis. They say 10-15 years from Dx you may need a tx, so it’s a bit unclear when that is for me.

MrTwissel- how do you live with the uncertainty?

river mouse,
I am 28 years old I was like 19 initially. I was very ignorant on the matter. It wasn’t until the last couple years I truly started to understand the seriousness of my situation.

My symptoms started with sudden jaundice (total bilirubin was about 20) and itching. My GI doctor did CT, ultrasound, and biopsy, then the diagnosis of autoimmune hepatitis was made. I was put on immuno suppresant and occasional steroids for about 4 yrs, until a nurse practitioner saw my high ALP and referred me to see a hepatologist. Then, two more biopsies, and one MRCP, diagnosis of PSC was confirmed.

I don't blame my first GI doctor since PSC is so rare. And some of my immue indexes are at ambiguously high level. And I never had cholangitis attack. Biopsy showed some inflammation but nothing specific. Both innumosuppresants and steroids 'worked well' since I never had jaundice again during those 4 yrs. All these put together, an AIH diagnosis does seem 'reasonable'. My current GI doctor always got pissed when I asked him why I can't take steroids when there is jaundice but no infection. Of course there is risk, but I know for sure it will work - lower bilirubin number!

Yes… Autoimmune Hepatitis is one possible Dx that is being considered.

Rivermouse, uncertainty is the nature of PSC. It is so unpredictable, we all have to make peace with it in some way, shape or form.

I chose to look long term, knowing there will be bad days, if not weeks, in my future, and I control what I can, and accept, however unwillingly and not quietly, what I can't.

Jeff

I have heard of people having both disorders together. The fact that the steroids helped you makes sense that this could be the case. In my situation they put me on steroids for autoimmune hepatitis but that made no impact. I reseached and referred myself to a new hepatologist who diagnosed me with PSC. He then took me off of steroids and started me on high dose ursodiol which finally helped me. It brought all of my enzymes down including bilirubin levels back to normal.

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Thank you to everyone who supported me yesterday by sharing your diagnosis stories. My 14 year old son was diagnosed today with PSC. They are considering whether he also has overlap with Autoimmune Hepatitis. I was very glad I was able to remain calm and collected and not cry, so my 14 year old has no idea what a serious diagnosis this is.

Thank you. I asked the doc if it was just one or two bile ducts diseased, and he said no, the MRCP clearly showed that all of the ducts, major and minor, inside and outside the liver are diseased. We are going to a hepatologist ASAP.