I agree that a liver biopsy should be considered. I have had at least 4 of them - minimal pain if done properly and risks are minimal.
Have your phosphorous checked. My itching is controlled when phosphorous is near normal.
EAD3
EAD3 said:
I agree that a liver biopsy should be considered. I have had at least 4 of them - minimal pain if done properly and risks are minimal.
Have your phosphorous checked. My itching is controlled when phosphorous is near normal.
EAD3Thanks, I need to write all this down. This group is great.
pistonhead76 said:
rippi said:Hi,
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.
Hi,
little alcohol may be too much! except for your birthday and may be New Years Eve try to avoid it completely. Only a spoonful of wine knocks me off, it's just not worth it!
Regards and greetings from Germany
Rippi
Thanks for all the help everyone. Someone mentioned this could be non alcoholic fatty liver disease. Could symptoms of that be this bad?
Hi,
I don't know a lot about NAFLD, but a simple ultrasound would show the liver light up like a christmas tree because of the accumulated fat. I suspect that the doctors would have noticed that.
Regards,
Chaim
Hi There.
Do you by any chance have ulcerative colitis? If you do then it might be small duct psc. it is really hard to diagnose small duct psc without UC. I hope it isn't psc.
Ferretlove
ferretlove said:
Hi There.
Do you by any chance have ulcerative colitis? If you do then it might be small duct psc. it is really hard to diagnose small duct psc without UC. I hope it isn't psc.
Ferretlove
Hi Ferretlove,
I dont know if I do or not. I just looked it up and I do have the symptoms. Well, except weight loss but that would be nice. But then again I have some symptoms of Crohns too. I must say, the nausea, fatigue, and brain fog have been so bad this past week. I cant wait to see the specialist on the 25th. Im so over this crap. Waking up exhausted after 10 hours of sleep is taking its toll on me.
I definitely understand all the symptoms you are having. I'm very sorry that you are suffering. Maybe you should ask your doctor for a colonoscopy. That way if you have ulcerative colitis or crohns they can fix that and properly diagnose your liver issue. All the best.
Ferretlove
pistonhead76 said:
ferretlove said:Hi There.
Do you by any chance have ulcerative colitis? If you do then it might be small duct psc. it is really hard to diagnose small duct psc without UC. I hope it isn't psc.
Ferretlove
Hi Ferretlove,
I dont know if I do or not. I just looked it up and I do have the symptoms. Well, except weight loss but that would be nice. But then again I have some symptoms of Crohns too. I must say, the nausea, fatigue, and brain fog have been so bad this past week. I cant wait to see the specialist on the 25th. Im so over this crap. Waking up exhausted after 10 hours of sleep is taking its toll on me.