my premature freakout

[ironictruth]

I just had an MRCP on Friday. It was to look at ducts in liver/pancreas. So, you know the tech cannot tell you anything but she asked me when my follow up was and I said January. She told me to call the doc Friday or by Monday. I then made a comment about taking pepto and xanax (docs ignored my symptoms a long time and a nurse I had in the hospital would joke with me that xanax and pepto was my cure) and she said "sounds like you are going to need a lot more then that". 

I am trying not to freak. But I have a lot of pain in the pancreas area along with the liver. Gallbladder was out in 1997 with an infected duct. Recent normal ultrasound and CT. Normal pancreatic and liver enzymes. 

I only had a weak DGP IGA 2x and a positive combined DGP 3x recently but when the tests were separated, they were negative. My biopsy showed duodenitis, no villi blunting. 

I thankfully have an upcoming appointment with a celiac specialist as well as a tumor scan my GI set up, this week. So, hoping to get some answers. I honestly thought I was in the clear with a CT scan and ultrasound. I had no clue how many things these tests can miss until they started adding on more. 

I am freaked out. I have had worsening symptoms for almost a year now. Inflamed thyroid, pain behind my eyes, arm, leg. Heart stuff. 

I am praying it is just a stone. They did an EUS in August and my common hepatic duct was 12mm, but it is not unusual to be enlarged after gallbladder surgery. 

I walk around in pain by my pancreas and liver almost all day now. But I think the small intestine hangs out there too. 

Oh, and I get a rash. Sometimes itchy hive like on the tummy (possibly after eating cheese), other times it looks like petichae and does not itch. Neither look like DH or a rash google pops up with for liver issues. Docs seem to dismiss the rash because they have nit seen it, only pics. 

Anyone have a MRCP? Stones? Maybe I have chronic pancreatitis? I do not recall ever getting the acute form except for horrible burning in that area while on gluten which had me pacing the floors and eating tums. I guess I came close in 97 per my doc at the time.

I know I should not be on here asking. Just looking for support and to get through the day!!!

[ironictruth]

[ironictruth]

[RMJ]

How frustrating/scary!  Hope you get answers from the docs soon.

 

[icelandgirl]

Hi there...I don't have any answers.  I do want to send you ((((hugs)))) and positive thoughts.   I do hope that all is ok for you.  Do the follow up call quickly, if nothing else to ease your mind.  I tend to worry a lot and it can be torture waiting.

Please let us know how it goes.  We are here for you.  ((((((hugs)))))

[ironictruth]

Thanks all. Yup, 1:00 am and pain/nausea keeping me awake. Hoping it calms down so I can zzzzzz 

[kareng]

What did the doc that ordered the test say when you called  on Friday?  As worried as you are, I can't imagine you would not have called and let yourself worry all weekend!  If it was very serious,  I am sure he called you Friday.

[ironictruth]

They did not call Fri and he is not in today (nit sure if he was Fri either) so not sure he has even seen the results. I did leave a message with the nurse. 

What makes me nervous is that he did an endoscopy back in August. The pain I had worsened after and it took 3 weeks for the office to get back to me after calling several times! Finally they did and ordered a few blood tests and that was it. Pain kept worsening so they eventually ordered the MRI. 

I guess I will just have to go there and request my records  if I do not hear back by this afternoon. I promisEd myself and my boyfriend that I would not let it get to me the whole weekend and I tried really hard not to until it kept me awake in the middle of the night in pain.

[ironictruth]

 well I guess really I still have no answers. So I have a neuroendocrine tumor study on Friday and a Celiac disease specialist the day before.  I'm sick of always being in pain and nauseous with my heart doing weird s***.