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Old 01-25-2013, 08:06 PM   #1
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Finally got a diagnosis!

Hopefully you guys remember me, I had a thread that went on for a long time back and forth and I decided to make a new one so this didn't get lost.

Last week I had a liver biopsy to see if we could figure all of this out. My hepatologist ran a bunch of blood work, testing autoimmune markers and mitochondrial antibodies (hopefully that makes sense, I'm tired and don't have the papers in front of me but I think that's what it is) and everything still came back inconclusive. He also tested for celiac, which was negative.

Anyway. I got my biopsy results today.

"severe chronic hepatitis (grade IV) with bridging fibrosis and pericellular fibrosis (Stage III).

Multinucleated hepatocytes are present."

It also said "These findings support the diagnosis of severe autoimmune hepatitis."

I didn't write everything out because there are notes that I'm assuming are pathology jargon haha, but yeah. I'm starting treatment for autoimmune hepatitis, and my hepatologist said he believes the outcome will be very good.

Thank you all for helping me out. It was good to have the reassurance that I should keep pushing to get the answers. I mean, my doctors were pushing forward but I was pulling back, fearing that I would never get an answer and would be wasting my time. I didn't really think that there was something wrong. But I'm glad I kept going forward and everybody on this board helped me so much in knowing the questions to ask, what certain things mean and what certain tests are for. You have no idea how much this has helped me!

Here's to hoping it all gets better!!

 
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Old 01-25-2013, 10:29 PM   #2
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Re: Finally got a diagnosis!

So glad you finally got a diagnosis I know how that can be. So they think they can fix it? Is this with meds? How long will it take before you start to feel better? We wait so long. They are assuming mine is from the cipro I took in dec let's hope so. I don't want mine back even though I've been nauseous all day.

Good luck! Cathy

 
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Old 01-27-2013, 07:11 AM   #3
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Re: Finally got a diagnosis!

Quote:
Originally Posted by no34evr View Post
So glad you finally got a diagnosis I know how that can be. So they think they can fix it? Is this with meds? How long will it take before you start to feel better? We wait so long. They are assuming mine is from the cipro I took in dec let's hope so. I don't want mine back even though I've been nauseous all day.

Good luck! Cathy
Thank you! It's been tough because even through everything, all specific blood tests came back negative. It all came down to the biopsy and I expected that to come out normal as well and for things to just be a mystery. I was quite surprised at the stage 3 fibrosis! I didn't expect any damage had been done.

Yeah, my doctor seems pretty confident that the outcome of all this will be great. He said that autoimmune hepatitis typically responds to the medication very well and pretty quickly. He has me on budesonide, so I'm not on the prednisone that they typically prescribe and that is so we can avoid the side effects. I researched yesterday and read great things about budesonide for AIH.

I am having blood work every two weeks for the next 6 weeks and I will have a follow up appointment to see how everything is going on March 14. Between now and that appointment though I need to get in to see my GI doc. My hepatologist wants me to get an endoscopy done to check if varices have formed because of my level of scarring. He said he would be quite surprised if they have, but he doesn't want to assume anything.

I hope you start feeling better and that everything is alright!

 
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Old 02-08-2013, 07:13 PM   #4
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Re: Finally got a diagnosis!

Oh wow, im sorry I didnt see this. I am happy you got the results and its treatable

 
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Old 02-08-2013, 07:21 PM   #5
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Re: Finally got a diagnosis!

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Originally Posted by Hypochondriacyy View Post
Oh wow, im sorry I didnt see this. I am happy you got the results and its treatable
Hey, that's alright! I wasn't sure if I should have continued on with that thread because it was all over the place. I figured I would post a new one and just hope it didn't get lost for those who kept up with me.

Thank you! The bridging fibrosis is scary but I have been told that can all heal itself with time after getting this disease under control.

 
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Old 02-08-2013, 07:49 PM   #6
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Re: Finally got a diagnosis!

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Originally Posted by abouttwodays View Post
Hey, that's alright! I wasn't sure if I should have continued on with that thread because it was all over the place. I figured I would post a new one and just hope it didn't get lost for those who kept up with me.

Thank you! The bridging fibrosis is scary but I have been told that can all heal itself with time after getting this disease under control.
Yes it sounds like you got it diagnosed just in the nick of time. Your probably very close to cirrhosis. The liver will indeed heal.
What Im worried about is the hard time you had in getting a proper diagnosis. When I say worry I mean for others, me included. Is an invasive biopsy the only way to diagnose AIH? I have had similar symptoms to you for many years, and sometimes worry I may have AIH. Although my AST ALT etc are all well within normal range. Bilirubin is sometimes .1 or .2 over the high range. My Ultrasounds have only shown fatty liver with heterogenous echotexture. I have had that nagging pain too, but thats recently gone now.
When I stopped drinking I had dramatic improvements.

I always thought AIH was easily diagnosed through blood tests.
But at least you have it under control (or will shortly) now.

 
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Old 02-08-2013, 07:51 PM   #7
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Re: Finally got a diagnosis!

Oh and dont worry about the upper endoscopy. I have then every year for GERD. Those are a breeze (unlike a colonoscopy).

 
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Old 02-08-2013, 08:13 PM   #8
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Re: Finally got a diagnosis!

Quote:
Originally Posted by Hypochondriacyy View Post
Oh and dont worry about the upper endoscopy. I have then every year for GERD. Those are a breeze (unlike a colonoscopy).
Good to know! I'm more worried about the sedatives than the procedure itself.

About AIH, from what I know most people have some sort of positive autoimmune markers. I was tested for many, but was negative on all. My liver enzymes have not been that high these past 5 years, really just in the 100's for the most part. So it came down to the biopsy which was unfortunate because it was absolutely awful.

Last edited by abouttwodays; 02-09-2013 at 02:17 AM.

 
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Old 11-04-2014, 06:35 PM   #9
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Re: Finally got a diagnosis!

hello, i followed your story and cant believe how long it took for you to get to the bottom of it! Well done for going forward with it! 10 years! im really shocked, why didnt anyone get a Fibroscan, its non-invasive! How are you doing now though, getting better?

 
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