My MRIs show PSC. My liver culture was negative. My liver enzymes were over 1,000 at one time. But, because my liver culture was negative, my doctor doesn’t know if I have PSC. I’ve been stented, which relieves the sudden itching, fevers, chills, & vomiting/dry heaves. It’s been about 3 months since my last stent was removed & the episodes have started again. I’m pretty sure I have PSC. Comments?
Merrywhite,
From what you have described, I’d say you have PSC. ERCP is the gold standard as far as I’m concerned for diagnosing PSC, and it’s obvious you have had strictures and had those ducts dilated and stented and now the repeat of the symptoms again. The MRCP also confirms.
I hope you are seeing a hepatologist associated with a transplant hospital, not your local yocal GI doc? This is most important for proper PSC care and treatment.
Mark
Thank you Mark. I’m seeing a GI specialist that is well aware of how to treat PSC. When I had my stent placement, there was a line of people in cots waiting for stent placement/removal by this doctor. She was the one that diagnosed me as “possible PSC” when the other doctors had no idea as to the problem. The nearest transplant place is 3 hrs away.
Sounds good MerryWhite. Every hepatologist is a GI doctor but not all GI doctors are hepatologists. When you mentioned he was also a specialist, that tells me he is probably a hepatologist as well. Anyway, from what you are stating you are in good hands. I’ve just seen too many folks get all messed up by going to a GI with no experience treating PSC and they have some pretty bad stories. Glad you are in good care.
Mark
My son was diagnosed by a gastro who specialized in ERCP. Once he diagnosed PSC he immediately told me to get a heptologist. If your doctor is not a heptologist, get one! you can work with the gastro for future ERCP’s, but having a heptologist connected with a transplant facility is critical.
Not sure what you mean by ‘liver culture’.
If they put a stent, that means you had a ERCP, then they should have an imagine of your bile duct tree. That will give you definite diagnosis. The GI doctor did ERCP should be the one answer your question.
MRCP does make mistakes. I know literature says its effectiveness equals to ECRP. Truth is, it’s not. It’s very close, but not 100%. MRCP twice said I have dominant constricture and both times, ERCP cleared that.
DHZ you are exactly right on target with MRCP vs. ERCP. ERCP is hands down the gold standard for PSC diagnosis. MRCP gives a good idea, but it is not conclusive in my opinion till the ERCP is performed. Besides, the ERCP they can clean those ducts out good in early stages of the disease progression and get you some needed relief from your symptoms, howbeit the relief is temporary, but that temporary in some cases can last for years or it can last for just a few months.
Mark
DHZ I had a liver BIOPSY.