Hey everyone, new here. I'm hoping I can get some questions answered by people with experience with psc. I've had right upper quadrant pains for many years. In 2012 they got pretty bad and a hida scan said my gall bladder wasn't working at all even though it had no stones. They removed it. Needless to say the pain and discomfort continued. I went to see a GI about liver stones. He sent me for an MRCP. Results said possible psc and to do an ercp to confirm. He did one and said negative for psc. I went to Cleveland Clinic for a second opinion ercp and it was negative also.
My liver enzymes are slightly elevated, I have severe fatigue, brain fog, actual memory loss, itchiness that's very bad on and below my knees, I scratch til I bleed, bloating, and a host of other issues. I feel like there really is something going on with my liver. Why would my mrcp show positive if I didn't have it? What else could my symptoms be from? I'm going to the university of Miami liver clinic in September for another opinion. They do liver transplants there so I'm guessing they would be familiar with psc. Any comments or advice would be appreciated. Thanks.
Since all your symptoms are consistent with PSC (or at least to liver disease), the only thing I can think of is small duct PSC, which is very hard to diagnose properly. I am no doctor though.
Since all your symptoms are consistent with PSC (or at least to liver disease), the only thing I can think of is small duct PSC, which is very hard to diagnose properly. I am no doctor though.
BTW, I also had a non-functioning gallbladder before I had it removed. Ultrasound technicians asked me several times why I didn't fast as I was told since my gallbladder was always empty and shriveled up (with sludge).
Quite the confusing mess for sure. So, for our general understanding, a few additional questions. (1) At the time of your gall bladder removal, you say there were no stones but was there any significant "sludge" being reported? (2) Also, what about the MRCP caused them to consider PSC? Was it the classic beaded string or more like a vague set of diliations (or strictures), intrahepatic/extrahepatic? (3) When you say slight elevation in your enzymes, what were some of your numbers, if you care to share those?
It seems strange that they would even consider doing a ERCP after a MRCP, just from a PSC standpoint alone. This is because of the additional risks in involved with the ERCP especially with the now known "diseased" or weakened bile ducts - they could rupture with the added pressure and then you've got real issues. It seems they may have been interested in either resolving a dominate stricture seen in the MRCP or they may have been interested in a possible sampling to investigate any chance of a malignancy (no wish to scare you with this thought ...)?
Your other symptoms do point to something along the possible liver disease route. Did your MRI imaging also show some of the other secondary features that PSC can cause to be seen in the background liver parenchyma as well? Like heterogeneous enhancement, etc? Any elevation in your CA19-9 (if they checked) - PSC simply by itself can cause an elevation?
Sorry for all the question, but you do have a bit of a puzzle.
Hi, thanks for the reply.
1. Yes, I do remember them saying is was full of gel or sludge.
2. There were definite beads in the MRCP but only on 1 or 2 ducts.
3.Last blood test my ALT was 60 on a 0-44 range. Sometimes its higher, sometimes lower but is always out of range. My AST is usually ok but sometimes out of range. ALT has been high my whole life.
4.The first GI doc said the ercp is used to verify PSC. The second opinion doc said the first ercp wasnt done well and needed to be done with higher pressure to get the contrast higher into the ducts. He also said no psc.
5. Im not sure about any of your other questions but I will check. Thanks again.
BTW, I also had a non-functioning gallbladder before I had it removed. Ultrasound technicians asked me several times why I didn't fast as I was told since my gallbladder was always empty and shriveled up (with sludge).
Very interesting. I wonder if thats a common trait of PSC'ers.
Do you take any medication? Recent research suggests that it is important to make sure that your ALP (alkaline phosphatase) is less than 1.5 times normal. Taking ursodeoxycholic acid (UDCA or Urso) helped me achieve that.
Do you take any medication? Recent research suggests that it is important to make sure that your ALP (alkaline phosphatase) is less than 1.5 times normal. Taking ursodeoxycholic acid (UDCA or Urso) helped me achieve that.
The first doc prescribed URSO but then said it wasnt necessary after he did the ercp.
Your symptoms are clearly consistent with PSC but sometimes a diagnosis is hard to nail down. Have you had periods where you run a fever, felt nauseated, chills ? It feels like you have the flu ? These symptoms are consistent with having a cholangitis flare up. How about jaundice ? I am assuming you have had your bilirubin checked. If so, do you recall if it was elevated ?
When seeing your new Doctor, discuss having a liver biopsy done. This is a helpful test when done with other tests.
Have you had or have ulcerative colitis or Crohn's ?
Hello,
Yes the nausea is pretty bad sometimes and the severity comes in waves. Most of the time it has replaced my feeling of hunger. If I feel nauseous it usually means Im hungry. I dont have fever or chills, I have hot flashes but my temp is always normal. I do have cold extremities on occasions despite being in S. Florida. Hyperhydrosis too. My bilirubin has always been normal. Ive never been checked for UC or Crohns but I do have some kind of irritable bowel thing going on. Going #2 is never pleasant.
talking from my own experience I would follow Chaim Boermeester and think that you might have small duct PSC (my problem).
Sludge in some bile ducts and in the gall bladder, strong to severe symptoms about every 10 to 15 years that disappear within 2 or 3 weeks, nothing found in MRCP and ERCP was my history. One out of four biopsies finally led to my diagnosis.
It took 50 years (!!!!!!) to find the problem. Now at age 67 symptoms are "steady", but I can live with it. My doctors claim, that it's a defect I was born with. URSO and in the future perhaps NORURSO may help to clean out some of the sludge. I can live with it, but on MUCH lower speed I was used to. I still live, probably won't need a transplant, and that counts positive.
talking from my own experience I would follow Chaim Boermeester and think that you might have small duct PSC (my problem).
Sludge in some bile ducts and in the gall bladder, strong to severe symptoms about every 10 to 15 years that disappear within 2 or 3 weeks, nothing found in MRCP and ERCP was my history. One out of four biopsies finally led to my diagnosis.
It took 50 years (!!!!!!) to find the problem. Now at age 67 symptoms are "steady", but I can live with it. My doctors claim, that it's a defect I was born with. URSO and in the future perhaps NORURSO may help to clean out some of the sludge. I can live with it, but on MUCH lower speed I was used to. I still live, probably won't need a transplant, and that counts positive.
Good luck to you and greetings
Rippi
Hi Rippi,
Thanks for your reply. Sorry to hear it took so long for them to figure it out. I hope I remember to tell the new doc at the liver center in Miami about the sludge in my gall bladder. That seems to be a common trend. I will do some research on small duct psc and bring it up. Whatever I have, my symptoms are frustrating. I run into mental blocks all the time and the fatigue is ridiculous. Im 38, male, and have 2 small kids. It seems my life has come to just working and sleeping and hoping the sleep was somewhat refreshing. Though it rarely ever is. I also noticed that if I drink alcohol the symptoms the next day are 10 fold in intensity and it takes days to slowly wear off. Almost like a week long hangover. Needless to say, I dont drink often.
