Has anyone had a MRE (not an MRI) at the Mayo Clinic? If so, I'd love to hear about it.

[KarenRL]

I'm trying to get one scheduled, but would have to travel and it could get pretty expensive, so I want to make sure it's worth it first.

[KarenRL]

Here's a link to a video about it. It looks like it's been around for at least 4 years. I wonder why Mayo Clinic hasn't sold the technology, so that patients can get these scans in their local hospitals?

youtube.com/watch?v=CsigfVo...(Not working as expected?)

[littlemo in reply to KarenRL]

Hi KarenRL thanks, it's great for all us with liver conditions to know I that through your link.I may have to go through a liver biopsy in the not too distant future but now I know this information I will be asking the top hepatologists about MRE when I see them although as I will be having my transplant assessment done in U.K. can see it may be a case of them saying well we just don't have the equipment, but hopefully not. This is exactly why this site is invaluable sharing info like you just did thanks again.

[Tumbleweed41 in reply to KarenRL]

I'm sure that the equipment could be tremendously expensive and most smaller hospitals simply can't afford it.

Research the financial aspects of going to Mayo. I know that they have special helps for pts and family. The trip itself would probably be the highest financial outlay.

Good luck -

[KarenRL]

Please keep me posted regarding what your doctors have to say about this technology. My doctor seemed to be steering me away from it....saying that it is used for staging and that my biopsy already told us what we needed to know. My argument was that the biopsy only gave us a picture of my liver in that specific location, not my entire liver. My doctor said that 80% of the time, biopsies give them a true picture of the state of the entire liver. He said the MRE was expensive and may not be covered by insurance and that it wasn't really proven technology. I'm not sure I agree. So, now I have a big decision to make....because if I proceed, it won't really be with his support, and I have to have his office forward my records, complete forms, etc. I wish there were more folks out there who have had this scan who could tell us more about it. I'm not really ready to nix it all together.

[Tumbleweed41 in reply to KarenRL]

At this point my thing would be to check the insurance coverage. Then all else would hinge on that answer. -

Get a copy of your medical records for your own "stash". -

Is your Dr. a PC, Gastroenterologist or Gastroenterologist/Hepatologist? It sounds like he is pretty well informed.

I read Kosy2 below and I have the same question. I'm sure all of us would like to know the the exact particulars of what is going on in our bodies but that just isn't possible. We get the best Dr. that is available to us and we go with them. We do our own research and join forums, but the bottom line is this (and please don't feel that I am arguing with you or "preaching at you", that is not my intention at all) we with PBC have an incurable disease that is able to be "slowed down" or "level maintained" with the proper medication. As much as we dislike taking the medication, as much as we dislike being "sick", as much as we dislike having people think that there is really nothing wrong with us because we "look good", the reality is we have PBC. Period.

Personally, I have a problem lots of times with being "bubbly and positive" like some of them on here. They are an inspiration to me and hopefully to others who need that "boost" over the bad times. My Dr. (a G/H) told me 5yr ago that I was at 85% and stage 3 after much blood work, a biopsy and an Endoscopy / Colonoscopy. It took me quite a while and a lot of research and venting to come to terms with that. Yes, I am older and have lived a pretty good life, but truth be known, I'm not quite ready to give it all up yet. - We all understand that it is not easy not "knowing it all" but finally coming to grips with it is the best thing you can do for yourself (and your family). Life is too short and we (me included) need to enjoy each day to the fullest and best of our ability. Sometimes we even need to "fake it" just to make it thru the day and that can be a challenge at times.

Please forgive me for going on so, but I just felt that this needed to be said, and maybe not just for you, Karen. I hope you don't feel that I was "coming down on you" for feeling the way you do. You have a right to vent.

Please accept a BIG HUG. -

Tumbleweed41

[kosy2]

What is it that you hope to learn by having an MRE that you don't already know?

[KarenRL]

Basically, what I was looking to gain was just what this video states the MRE offers.....a true picture of the entire liver, not just one, specific part.

There are many resources and "experts" who claim that the biopsy really doesn't give us a true picture of the entire liver....simply because it is a sampling of one particular spot. I guess my hope was that, perhaps, the biopsy just happened to capture a particularly bad spot of my liver and that maybe the scan would show larger parts of my liver to be in a less advanced stage than the biopsy showed.

I'm only 40 years old and was diagnosed at Stage 3 recently. My doctor has been very clear that my case is quite different than he has seen before. I have NO positive antibodies in my blood work for either condition....and yet, my biopsy showed the fibrosis to be fairly far along. So, with my case being a bit A-typical, I thought the MRE may be even more helpful in getting a complete picture of what we're dealing with. And, because my blood work can not tell us if the chosen treatment is working, I have to have further biopsies to determine whether or not we are on the right treatment path. Something I'm certainly not looking for to.

And finally, I'd be lying if I said I wasn't looking for a little hope. Of course, I want to find out that my liver isn't as bad as the biopsy seems to indicate

[Tumbleweed41 in reply to KarenRL]

Karen

Saying that you have NO positive antibodies in your blood work for "either condition" (?) are you saying you are both AMA and ANA neg.? Is there another "condition" other than the PBC?

What if - - you contact Mayo and see if you can converse with someone that is familiar with PBC and with the MRE and maybe get an opinion as to how you should proceed? I have toyed with the idea of going to Mayo, myself, but haven't wanted to put my husband thru that just yet, but I have spoken with them and they seem like a caring staff and more than willing to help you. 'Nothing ventured, nothing gained' eh??

Hugs. -

[Tumbleweed41 in reply to Tumbleweed41]

P.S. - just caught another of your ?? and saw the "other condition". Our AIH/PBC overlap group is getting bigger. - You would think one condition was enough, hmmm?

Hugs -

[kosy2 in reply to KarenRL]

As far as the PBC is concerned, the ONLY treatment is URSO. The amount perscribed goes by a person's weight not symptoms or progression of disease.

As for the AIH the biopsy confirmed the dx. Weather the treatment is working or not blood test will tell as well as symptoms such as

•jaundice

•spider angiomas, or abnormal blood vessels, on the skin

•nausea

•vomiting

•loss of appetite

•dark urine

•pale or gray-colored stools

Please forgive me if I am being to blunt but what I hear you asking is - how long do I have until liver failure? A very fair question and one I want the answere to as well. Unfortunately with PBC/AIH the answer is not an easy one for many reasons.

PBC is rare, PBC/AIH more so and for that reason not widely known nor studied. To make matters worse each person with PBC (and most other autoimmune diseases) presents with a wide range of symptoms and response to treatment.

Consider the fact that person A can have stage 1 and progress in 2 years to liver failure and person B can have stage 3 or ever 4 and never progress to liver failure and die of "old age".

Lets say a hospital close to you next week announces they are now doing MRE. You have one and say it showes 50% stage 3 and 10% stage 4. How would your treatment change? The remaining liver may be working good enough that you are not jaundice or your clotting factor is not affected. Or it could show that your liver is 2% stage 3. Neither scenario can predict how long to liver failure.

In my humble opinon, I do not see much value to a MRE concidering the expense and travel. (By the way were are you?)

[KarenRL]

Tumbleweed41 - Thanks for the replies. And yes, I have AIH/PBC Overlap...sorry to hear that you do as well. Certainly not a group you like to see increasing in numbers, huh?

And, that's correct, my blood work does not show positive antibodies for either condition. The only indicator (in my bloodwork) that something was off was slightly elevated ALT. Which is why he and I both were so surprised by my level of fibrosis.

To answer your earlier question, my doctor is a Hepatologist. He's a well-respected, experienced doctor in my area. But, because he was clearly a bit "perplexed" by my case, it made me feel that I could benefit from a second opinion. And when I saw that the Mayo Clinic offered different technology that may give us more information to go on, I thought they may be a good choice.

Your suggestion to call them about insurance and to discuss my case is a good one. I think I'll do that this week, in fact.

[KarenRL]

kosy2 - Thanks for the replies as well. I appreciate you taking the time to write it....that's all good information and I get what you are saying.

But, I'm actually not asking "How long until liver failure?". My doctor and I did discuss all of that and I do understand that is an impossible question to answer.

My question really was, "Has anyone had this scan?" Because my blood test results do not "match up" to my biopsy results (that's basically how my doctor put it), I feel a second opinion would be in order. Just to make sure we are on the right treatment path, and that I have been diagnosed properly. Mayo Clinic seemed to be a good choice, given their reputation. And since they offered this new technology, I figured that would give us even more, detailed information to go on.....if, in fact, the technology is sound. So, that's basically why I wanted to "talk" with someone who had this done. I'd like to know if it's even worth it to consider the expense, etc.

To answer your question....I'm in Virginia (USA).....so I would have to travel to Florida. The travel would be about $300.....I have a free place to stay (friend's house)....so, then it's just whether or not insurance will cover the expenses of Mayo Clinic itself.

[kosy2 in reply to KarenRL]

You are close to me, I'm in Baltimore, MD. Sorry i misunderstood your question. I would think the biopsy more difinative than blood results. After all that's the reason biopsy was done in the first place.

As far as AMA- 5% of PBCers are. ANA- for the AIH, well my belief (now mind you it's just my gut feeling) is most PBCers will at some point have AIH if the doctors keep testing for it (blood test, biopsy). Just because your doctor has not seen your presentation of PBC does not really surprise me at all. This stuff is rare.

Now while researching I have come across the idea that there is a fair amount of misinterpertation by the pathologist. So for that reason I do see the benefit of having a second look at your liver samples.

My biopsy was done at one hospital and my liver doctor was at another. He requested the slides for his pathologist to read. His findings where different. So now who do I believe? Do I find a third or fourth and take an average? I just don't know sometimes. You will have to judge for youself. You can't put a price on peace of mind.

For me the question always comes back to - What would I do different? The answer is always the same - Treat the symptoms as best I can, because there is NO cure for PBC.

I do so enjoy the discussions I have with my PBC buddies. It alows me to take a look at PBC in different ways. I gets me out of my own head and therefore I am able to make better decisions concerning my health.

Trust your gut - it will tell you what is BEST for you.

[Lawyers in reply to KarenRL]

I had MRE at MUSC in Charleston South Carolina. I was Stage 1. Have had 2 biopsies One in 2004 and one in 2018 saying Stage 2. MRE was covered by my insurance.

[KarenRL]

Thank kosy2. You are right - you can't put a price on peace of mind. I think it just takes some of us a little more to achieve that -- I'll admit, that's something I'm really struggling with.

I'm one of "those" people that likes to be in control and needs clear, definite facts and data....probably one of the worst personality types to get diagnosed with something so rare, somewhat unknown and incurable as AIH/PBC Overlap Syndrome. Then, add in the odd, conflicting blood test results, and I'm really a mess!

It's kind of funny actually - my boyfriend was there for my diagnosis and on the way home, he said, "I realize that vague diagnosis is probably driving you crazy." To which I said, "Absolutely." And 3 months later.....it still is. Of course, I'll get there eventually....because I have no choice. But, I'm still going through the process. I think, in some ways, I'm still in the denial phase and looking for something or someone to tell me it's not as bad as it sounds or that the diagnosis is just plain wrong.

But, chatting with folks like you and the other kind people here on this forum really does help. And, I'm trying to "give back", by responding to others when I have something to offer.

Hopefully, we can all help each other navigate through the journey of living with liver disease.

[kosy2]

Karen,

I am one of "those" people as well. The way I see it PBC does have clear definite facts. For most not the facts they want to hear.

1. URSO is the only medication that MAY slow dow the progression of PBC.

2. There is NO CURE for PBC only liver transplant when liver failure occures (that's if you quilify)

3. The cause of PBC is not known.

4. Even with URSO the progression of PBC is unpredictable.

5. There is many symptoms associated with PBC and most doctors are clueless.

If you look at some other diseases say breast cancer - there are many different views on treatment. With my personalty all the different options would drive me crazy. I would always be second quessing myself as to the "right" treatment.

With PBC there really is nothing to decide except do I take URSO or not. I find that a comfort - in not having any choices I can't make the wrong one.

What I think really sucks about PBC is that I imagine a painful journey towards death. And that scares the HELL out of me.

In addition because PBC is thought to be autoimmune we are likely to have other autoimmune diseases. However with autoimmune diseases there are many symptoms that are overlaping. So then the question becomes do I pursue trying to get dx for other autoimmune diseases when like PBC there is no cure and not a lot of treatment options. And i?n some case the treatment is counterindicated between the autoimmune diseases.

Did I say THIS AUTOIMMUNE STUFF REALLY SUCKS?

The truth is we are all going to die some day. So really the only thing that has changed for us is that our death will probably be from liver failure. Of course maybe NOT as I could slip and fall as I get out of the tub tonight, hit my head and die.

I hope I did not make you feel worse. The hope I want to give you is the reality that MOST of the time we can not control what happens to us. Something most of us don't want to face. The real truth is while you can't alway control what happen you CAN ALWAYS control HOW you react. So in the end I feel I do have a sence of control over my life.

I want to thank you for your responses. I can tell you have done your researsh and I know you have helped me as well as many others.

BIG HUGS

Michele

[KarenRL in reply to kosy2]

Michele,

You make good points. I appreciate your responses and I'm hopeful that we can all continue to help each other. It's nice for all of us to have an "outlet" like this.

Thanks again.

Karen

[gallatracy]

Hi Karen,

I just had an MRE in NYC . Was diagnosed November 2016 with biopsy after elevated LFTs and AMA were found pursuing another medical condition. Biopsy consistent with stage 0-1 and all of my blood tests normalized before starting URSO ( I was put on steroids for arthritis and I think the steroids helped to normalize my labs although my doctor isn’t certain).

Was still freaked out about diagnosis and the possibility of the biopsy missing more severe disease and the hepatologist offered to do a fibroscan to allay my fears. Lo and behold they did 3 fibroscans thst day and all of them were different and all showing significant fibrosis. He said he couldn’t explain these results but he felt we should trust the biopsy as gold standard especially since I felt good and had normal labs.

This continued to bother me and when I found out about the MRE I pushed to have it done. He said it was indeed more accurate but my insurance might not cover it. My insurance covered it and had my first MRE 3/2017 which showed no fibrosis only inflammation of liver.- stage 0-1. Have been stable since then and had another MRE last week which showed stage 1-2 fibrosis throughout, with areas of stage 2-3 fibrosis. Very upsetting since I thought my liver was the least of my health care issues — many autoimmune issues.

Now waiting to hear from my doctor.

Sorry for this long response - just know that many teaching institutions have MREs now . In NYC I believe all the major hospitals have them so you might research and see if there is a hospital closer to you that has the ability to do an MRE.

[Ktltel]

Hi,

Yes...they also do them in northwest Missouri at Research Medical Hospital. I've had 2. Very accurate, just like an MRI but they use different software and a paddle is placed over your RUQ area before you go in the tube. No pain....takes about 20 min.

Stella❤