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Possible misdiagnosis


#2

Liver biopsy is not the greatest diagnostic tool as they only take a very small sample from one or two sections of the liver that might not yet be effected by the faulty bile ducts. Biopsies are not without risk either. There are scans (fibro scans) and I think the are other scans too … that are better for seeing the density of the whole liver and finding if there is evidence of fibrosis and/or cirrhosis. But that is not definitive for PSC either as you can have PSC and no fibrosis or cirrhosis … Depending on the stage you are in. Maybe it is too soon to tell, but I’d find a specialist that deals with PSC on a regular basis. Oh, and the fibro scans are not for imaging the bile ducts. The MRCP is best for that and some on this forum have written about MRI WITH dye, which is important too. Hope others have some insight for you here. Must be frustrating. Best wishes for answers and health!


#3

I had a similar experience. I was diagnosed in 2005 after having my gallbladder removed. Had an ERCP to make sure there were no stones in my bile ducts and that's when they saw issues with my bile ducts. A liver biopsy pointed to PSC. Over the next few years my LFTs were normal. Continued to go to my liver doc with the assumption of PSC. Finally in 2009 decided to get a second opinion and was told they didn't think I had PSC. Was relieved and went on with my life. Everything was fine until May 2014 when my LFTs, which had been normal for years, went crazy and I felt awful. Had another MRCP and was told PSC. Now I'm back at my original Doctor and my LFTs are fairly normal. An occasional bump here and there. PSC is a weird disease and everyone seems to experience different things.


#4

This is very good news, in that ducts are open. I know it doesn’t solve all concerns, and you must feel uneasy with the abnormalities with symptoms, and LFTS. But, still very good. Hard to propose thoughts without clinical picture, so wondering what about your next steps in investigative strategy.


#5

Went through numerous tests before the doctors diagnosed me with PSC.

ERCP, MRI'S, LIVER BIOPSY, BLOOD TEST AFTER BLOOD TEST.

BIOPSY Has to be pulled from the right spot on the liver. Otherwise the doctors may

assume you don't have PSC. My liver specialist said that he has had numerous mis diagnosis because

The biopsy wasn't done correctly. This disease is not easy to get a firm diagnosis from.

Doctors have to be certain before they hand you that decision.

God bless everyone.

Steve Ristenpart


#6

I’m going through something similar. Have had elevated liver enzymes since mid teens. Gallbladder removed at just 16 due to high amount of stones. Was diagnosed psc at 23 then had three children in between all for which i had a condition called cholestasis in pregnancy. At 29 was cleared from having psc after another liver biopsy and endoscopy. Now at 36 after routine biopsy large varices veins were discovered, indicating cirrhosis of the liver, but upon mrcp no scarring is found in bile ducts to indicate psc. They think i may have an autoimmune disease but still uncertain as to what. Bilirubin is currently high and i have severe itching. Have you been able to discover anything else about your condition.


#7

Hi, after further testing it was confirmed that I have primary biliary cirrhosis (pbc). Symptoms are very similar to psc. I still itch but it’s manageable as I am on 600mg a day, chronic fatigue is also a daily challenge but I know what my body can and can’t handle and when rest is needed before taking on any daily tasks. I am very happy and confident with the Dr I am with. Unfortunately my disease has progressed faster than he expected as I have developed the start esophageal varices. A liver transplant is inevitable in my case, Dr reckons within 3 - 4 years. But I am very hopeful and have faith no matter the circumstances. I am due for my quarterly check up but my LFTS since diagnosed have always been quite high with slight decrease here and there. I hope this helps and all the best with your health. Please let me know how it goes


#8

Be very careful because I went through similar things you did with waiting years in between to do biopsies and scans. First diagnosis was PSC. Years later second diagnosis said no PSC. And went in with my life normally till this year when i started getting bruises and went back for third biopsy and i have full on liver cirrhosis. This illness is a silent killer. You go months or even years in between just fine and then it comes back with a vengeance. Get checked often because once the cirrhosis starts you can’t stop it.


#9

I was told last may id psc now the doctors are saying they dont think i have it …all the bloods tests and psc test have come back clear …just had mrcp scan 4 weeks ago so i waiting to hear what they to say…can the have got it wrong the first place …


#10

Andrew,
Are you seeing a hepatologist or just a local GI? It’s important to get the best diagnosis to see a hepatologist. Have you had a ERCP yet? This is considered the gold standard for diagnosing large duct PSC. Your liver biopsy might be perfectly clear and yet you have PSC in the larger ducts. When PSC first forms in large ducts, the liver is healthy and fine. It’s only after a period of time when the stricturing of the ducts by the disease prevents or greatly reduces bile flow then you start having cells die in the liver leading eventually to Stage 4, etc.
Bottom line, see a transplant hepatologist associated with a major hospital that does liver transplants if you want to be absolutely certain.

Mark


#11

Tks mark for the reply…i had 4 ercp over the last 15 months …its a hepatologist im under at a main hospital in dublin…i didnt have liver biopsy and no meds …its started with getting gallbadder out had ercp and stents put in …hopefully i hear from them soon and this mrcp scan i had show if there any scarring there…site very helpfully and if doh i dont post much i enjoy reading posts and learning about this psc …


#12

For me the liver was fine but at first too. For many years I showed high liver functions and no symptoms. My Gastroenterologist diagnosed me this last time with end stage liver disease due to PSC and my hepatologist said that the ducts looked like they had no scarring and he doubted it to be PSC. Upon going back my gastroenterologist said he is 100% sure it is in the small bile ducts and they usually don’t check those because it is a different test.


#13

ERCP is the best. Have heard cases that MRCP gave out wrong results.


#14

Had ercp done but said mrcp test to see for scarring…does this mean
She wasnt fully sure then after ercp …


#15

ERCP can only go up so far in the bile ducts as the ducts become smaller and smaller the closer they get to the liver. MRCP imaging allows them to see all ducts as well as surrounding organs. Perhaps they suspect small duct PSC. It also gives them a good base line to track disease progression.

Mark


#16

It’s the contrast, which is utilized to catch images. ERCP is just a tool to deliver the contrast into bile duct tree.


#17

You are correct DHZ, but for me they could not go up into the small ducts of the liver to remove strictures as the ducts were too small. They attempted to shoot dye up there but there were too many blockages. My poor liver was just shot. Thankfully after that ERCP in June I got my transplant in July, 2015.

Here’s my poor liver when they took it out.


#18

The problem with MRCP is that unlike ERCP, it’s not a direct view. It’s a processed and digitized image. Many things could go wrong and provide inaccurate information. Of course, software has been worked on again and again. The results are way better now. Take me as an example, repeated MRCPs say that I have dominant stricture. But subsequent ERCP did not see anything abnormal in CBD.


#19

I agree. I’ve always said that ERCP is the gold-standard for definitive large-duct PSC diagnosis. Also, sometimes as you have stated with MRCP it can actually be almost the reverse. The imaging can look ok but when they get in there endoscopically they find out there’s more to it than what they thought. The key for me with ERCP, was to find the best ERCP doctor I could find and I didn’t let any other doctor touch me. Very fortunate to never get a bad case of pancreatitis after one of those.

Mark


#20

Doc probably meant to say liver scarring. ERCP can’t see liver, just bile duct tree.


#21

Totally agree. Many GI doctors can do ERCP, not many real good ones. Same thing with liver biopsy, it’s almost painless with a good doctor.