PBC Foundation
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MR with elastography

Yesterday I had an abdominal MRI with contract and an elastography under MRI, at a large research hospital in California. Got back the results last night, and they are not good.

1. Liver Fibrosis stage 2-3

2. Lesion on pancreas, with no worrisome features

3. Multiple inflamed lymph nodes

I’m in pain (liver area) most days, for 4 years, but only diagnosed with PBC in early 2017, after finally showing positive on the AMA test in late 2016.

Anyone else here ever have an MRI under elastography before? What pancreatic issues?

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Hi - i recently had similar tests checking the pancreas et cetera, but my results were largely unremarkable. Truthfully i did not think fibrosis could be detected with an MRI, Was that a fibroscan? How are you feeling? Do you feel any symptoms beyond the pain, like itchiness or fatigue? When do you see the doctor next? It sounds like you are at a great hospital I am thinking good thoughts for you. Please let us know. Thanks

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Elastography is the “gold standard” in checking for liver stiffness even above a fibroscan , according to the chief of the transplant department at UCLA where I was seen in the MRI laboratory. I’m not sure what to think.

I don’t feel well, major fatigue, nauseated, and only a slight amount of itching at night. Pain is constant, in back, under ribs, liver area. General malaise.

I don’t see the hepatologist for awhile again, as I saw him in mid July, but he still has to interpret my test results for me, and he writes in the MyChart system with me.

He said prior, that if it yielded some other GI issues he would send me to the research department for GI issues. I also have an internist and he is easier to contact and get info from. He will let me know, I hope. as he’s the doctor who originally diagnosed me with PBC last year before sending me off to UCLA specialists.

I also see a GI doc locally, and I’m to see him mid October. I’ll know more then, but I’m impatient and worried.

Thanks for your response.

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I would call and see if you can be seen sooner. Tell them your hurting. I had that test done and told plan will be to have it once a year and alternate with US. Results stage 3 fibrosis but Blood work is all normal. At this time pain and itching isn't often.

Praying you feel better soon

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Thank you for your response. They know I am in pain, I’ve been prescribed narcotics (Tramadol) which I never take. I feel like it’s not that bad of pain and I do not want to become addicted to opioids, as a crutch. I’ve never liked drugs. I get an ultrasound every 6 months and blood work every two. My blood is normal, but have been on ursodial 600mg total for a year and before that, on 900mg for 6 months.

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Tramadol is non-narcotic pain medication. But when it comes to liver issues and medication, less is always best. Feel better!

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Thank you, I’ve not taken it yet, but in fact it is a narcotic, albeit a synthetic. You can google to see.

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Good to know!

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Oh ok. I understand but if the pain gets too bad try the medicine. It may ease the pain. You don't have to continuously take it but I do under stand worrying. Try not to stress it that makes it worse easier said than done. 🙏

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Hi

I live in Edmonton, Canada

You are describing my symptoms exactly. I would be most interested in hearing if you get any answers to why you are having these symptoms. The only additional symptom I would add is I have night sweats. I wake up drenched in sweat about 3-4 am.

I wear a pacemaker so can not have an MRI, but recently had a CAT scan, colonoscopy, gastroscopy to try to explain the almost constant pain. Results were that I had 2 polyps in colon, as well as they thought there was a polyp in duodenum, but proved to be scar tissue, multiple pancreatic cysts, and some non specific lymph nodes. Nothing to explain the pain.

I have PBC - diagnosis in 2016, but I’ve had increased LTFs for many years so has really gone undiagnosed for who knows how long . (Last blood work : ALP is 264 and Bilirubin was 25 (now back down to 14) Other LTFs were not remarkable) . AMA and ANA positive . I had a fibroscan at my last hepaologist visit and it was 9.5 so just barely stage 3 .i also had liver biopsy in 2016 to confirm diagnosis.

My hepatologist does not think the pain is from PBC but has no explanation for it. I do not have a GI Specialist and my hepatologist tried to refer me and was told they have nothing more to add .

The unexplained pain is by itself discouraging. Mine goes into my back in the right upper abdominal.just a little right of breast bone, under the ribs. Best explained as gnawing I guess. sometimes more intense than at other times.

I’m also very exhausted at times, not too bad itchiness, and feel anxious if pain gets too intense, and waves of nausea, but rarely vomit, I’m Losing weight but not too bad about 5 lbs over 4 months. I’m not overweight. I can not take URSO and not eligible for ocaliva so basically the PBC is not being treated at the moment.

If you find out anything that can help explain these symptoms, I would really like to hear from you.

Any other people on the forum that have similar pain symptoms?

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I get night sweats too. I think the pancreatic cysts and swollen lymph nodes make the pain. Mine is in my back, rib cage area, liver zone. I have PBC diagnosed in 12/16, but like you elevated LFTs for years, since 2014, AMA Only showed up in 12/17. Now on urso, my Alp is 85, ALT and AST low normal, and bilirubin never elevated. My hepatologist who is one of the most renowned in the USA, named Dr. Steven Huey Han at UCLA says PBC does not cause pain, that’s why he went fishing around for other causes and gave me a compete abdominal MRI. My pain gnaws too, it’s maddening.

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Hi, I've had Pbc for 11+ years, now have compensated cirrhosis with portal hypertension. The thing that took me to my Dr 15+ years ago was pain. I've had many many tests in 5 different hospitals, two of which are specialist liver units. I was told Pbc doesn't cause pain, yet what you describe is exactly the same. Being on this forum many people report the same symptoms.

I attended a Pbc foundation conference, which had professor David Jones speaking, he is one of the top 3 world specialists in Pbc. He said when Pbc was first discovered by Thomas Addison ( it initially had a much more complex name), he reported pain in patients. Prof Jones confirmed pain IS a feature of Pbc!!

It is wise to ensure it isn't caused by something which could be treated, but after many years I'm just doing my best to cope with pain, and find ways to manage it. It has been suggested that a transplant may rid me of pain when I need one.

I hope you keep well, look after your mental health and that helps to cope with ongoing pain.

Best wishes

E

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Thank you, and I agree about the pain, I think it from PBC. My Internist originally showed be some research which confirmed this, even after the Hepatologist kept insisting no.

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Thank you

I wonder how many other people who have PBC also have the pain we are describing. My hepatologist is convinced it is NOT part of PBC yet every test so far finds no explanation. I have also been prescribed tramadol and haven’t started taking it because I do not want to start to be reliant on narcotics. My brother was on it and other drugs while he was in severe pain awaiting back surgery. Got addicted and had a terrible time getting off it. Withdrawal was horrible, but he is a strong individual and was able to slowly get off it under a physicians assistance.

I also want to be very sure that the pain is not something that is treatable. Just taking pain killers might mask what is really going on.

If you have PBC and also have the pain we are describing, please write on this forum so that we can see if in fact it is a common symptom that many of us are enduring.

Thanks to all of you for your comments and encouragement.

J

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My GI said liver doesn't cause pain but when I went to my hepatologist he described how the pain comes and goes and where it's usually is and said yes it does cause pain

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I had a gnawing pain on my right side just as you explained it and it turned out to be ulcers. I was out on a 26 day procedureb of meds and pain is gone.

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Correction 16 days. It was called H-Pylori

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Thanks for your note. The gastroscopy showed that I had no ulcers or gastritis. They did a biopsy to rule out H-pylori. Negative as well. But I agree it is similar at times to ulcer pain. I’m also on medications for GERD so that treats ulcers if I had them. So again another dead end

J

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Too bad because that would have been an easy fix. They will have to keep at it until they find out what is wrong. People are not in pain for no reason!

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I had one which showed stage 3 fibrosis. The plan is to have it once a year going forward and an ultrasound 6 months in between.

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How do you feel with Stage 3 fibrosis? What are your symptoms?

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That's just it, I really don't have any symptoms. What I do have comes and goes. Last Nov I really got sick with flu like symptoms and more so at night. I kept get a fever at night. PC dr and ER said I had symptoms of blood cancer. Said if fever didn't go away they would test for that. I think the pbc caused it or my liver. I scheduled an appt to see a hepatologist. The test he did shows stage 3. Prior, GI said might be going to stage 2. Now, these last couple of days I been having cramps, diarrhea, freezing, sleepy and feel like I'm in a fog. Have trouble staying a sleep then exausted

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Hepatologist is anxious to see the results of the ultrasound due to get in October. If any changes from last with my blood showing normal.

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In my experience ultrasound doesn't show what needs to be seen. Unless you're looking for masses etc. Why not have an MRE or Fibroscan? Just wondering.

Stella❤

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