Curious as to your thoughts here:
I had an ERCP with stent placement on 12/5 and the cytology/biopsies on my strictures came back negative.
My semi annual MRCP was performed on 12/29 and my herpetologist said it looked great—improving structures and no lesions or masses.
The following day, on 12/30, I got a call from my ERCP doc that I had a positive FISH test, but that sample was thought to be lost by the Mayo Clinic and when it was found they couldn’t guarantee it hadn’t been compromised in some fashion.
I’m having additional tests run and an ERCP this Thursday (1/12), but don’t know how concerned to be. I know what a positive FISH can indicate, but with everything else looking good in feel cautiously optimistic.
Has anyone else experienced a false positive before on this test or had it turn out to be something else?
I did have negative fish tests from ERCP’s on 9/1 and 10/18 of last year. Stents are originally put in 9/1 and I had my first episode of cholangitis that landed me in the hospital for 3 days from 9/22-9/25
How are your blood tests (especially ALP, GGT, bilirubin)?
How often are they replacing your stents? They typically should be changed no longer out than 4-6 weeks from my experience. I do hope you have a doctor in advanced endoscopy that does ERCP’s all the time doing the procedure. I’ve heard from other patients who use a local GI or one that doesn’t do it often having some pretty bad pancreatitis episodes. I always insisted on the same specialist to do mine each time.
BR is hovering around 3.5-4.
ALP is around 250(it was as high as 1000 pre diagnosis)
I don’t think my GGT has been tested in years, so I have no idea what that looks like now.
They’ve been changed every 4-6 weeks.
They were originally placed 9/1 and changed out 9/23(due to cholangitis attack), 10/18 and 12/5.
I go to UC Medical Center(now well known for the Damar Hamlin situation) for all of my ERCP’s and care moving forward.
My 9/1 ERCP was performed by a different GI doctor and shortly after that is when I developed the cholangitis. I won’t be seeing them any longer.
How did your MRI imaging look when you had ALP close to 1,000?
Have you had CA-19 tested recently? That is traditionally good indicator as well (and easier to check in regular bloodwork).
My first mri was in 2015 when my alp was around 700 and it was clean. I wasn’t diagnosed with PSC until 2019 through imaging.
My CA 19-9 was normal. Last tested about 3 weeks ago.
How did the additional tests turned out?