Just wondering how many of you (if any) have normal ct scans ect. and are still diagnosed with CP. As of yet, they are still calling this acute recurrent pancreatitis. My CT scan is normal, my MRCP showed “mid body inflammation/pancreatitis”. My US is normal. My lipase is lingering mildly elevated (upon my 11/9 attack it was very high). I don’t have calcium in the pancreas or pseudocysts/abcesses. I was just wondering if the diagnosis is made strickly on test results. I just know I havent gone a week without some discomfort since my first attack in Nov of 2005. Thanks for any input!
Keri
Confirmatory diagnosis is with EUS (endoscopic ultrasound). All the CT scans in the world won’t tell squat (I have had an average of 2-3 every year for the past 20 years). Enzymes may or may not be elevated (again, I can get articles to substantiate this). When I went 3 years ago to the pancreatic specialist, his exact words to me prior to the EUS were “I doubt you have pancreatitis, but let’s see”…next thing I remember is waking up with Doc K next to my bed writing on the chart “chronic pancreatitis”. No matter what you do, get a copy of all of your records and have them handy dandy when you see a specialist. Sure helps in reducing a repeat of things that really stink and show nothing. Be proactive with your own care - it is your body, not the medical field’s. You DO have a right to know what all this medical stuff means (but be very cautious about how you approach the subject). Most doctors welcome an informed patient. If he/she doesn’t, find another.
T
Keke,
I go to the hospital for pancreatic pain that is so bad that I can neither eat nor drink (and I endure this condition for three days before I go to the ER!). My amylase and lipase are ALWAYS normal and I still suffer so much. So the test isn’t worth s**t really. And that is the TRUTH!
BTW, this has been so for 12 years now!
Anyse
my scans for several years showed only cysts on the front when they went in half of my pancrease was hard like leather luckily the tail and the body, behind it they found a huge mass that never showed, i kept telling them there was something in there, boy were they surprised ! ct scans do not always tell the whole story!
Julie
EVERY single test I had prior to my ERCP 2 1/2 yrs ago (that would be 7 1/2 YEARS of testing, hospitalization, biopsies, and unbelievable, unrelenting pain and vomiting…I lost 80 pounds…I was convinced I was dying) I had, at several points, mild elevations in liver enzymes and pancreatic enzymes, mild abnormalities - nothing definite on a liver biopsy. My brother DIED at age 26 from undiagnosed pancreatic disease and alcoholism - “No, ma’am (condescendingly) THAT NEVER runs in families. It is unheard of.” (and, therefor, never considered)
No, it was much more likely, apparently, that I was attention seeking, manufacturing symptoms, drug seeking, Munchausen’s, certified off my nut faker.
(I’m sorry if I sound bitter…LOL I guess I kind of am.) The point of my ranting, really, is to say listen to your body. Their tests can and will be an inaccurate measure of your disease…an ERCP from a high volume specialized center is your best bet to find out where you really stand as to how things have actually progressed and the condition of your pancreas. For instance, I had increased pressures in (on?) my Sphincter of Oddi, and scarring and narrowing of the small ducts within my pancreas. No history of alcohol use…I mean virtually none. The requisite teenage escapade, and that’s it…none since then. I just don’t like it. And NONE of their tests can accurately measure your pain, your pain tolerance, your tolerance for dehydration, etc.
Only YOU know these things - and you have to fight sometimes to find a doc that can be your advocate and hang in there with you. It took me 10 years to figure it all out…and to get the pieces in place - at last. A PCP, working with the specialist, working with me - listening, believing, and helping. I think the trust I have now in my docs has improved my mental health and depression hugely…I don’t feel like I am fighting alone any more. It was hard won…I had some really tough, honest discussions with my PCP and challenged him - and fortunately, he rose to the challenge. More work than a sick person should have to go through to get adequate care? Absolutely. Unfortunately, it may be what it takes with this disease. Be your own expert…educate your docs…be as persistent as you need be.
The short answer: YES you can have CP and have utterly and completely normal test results. Sorry for the long winded response- typing out loud, hopefully it will encourage someone :oP
Susan
Thanks, T.
I will continue to be proactive as you advise. Your post helped give me courage. After reading some other recent posts I’m also going to be sure that they really knock me out for the EUS on Wednesday. I don’t want to wake up with a tube down my throat! Take care of yourself.
Ellen