Hepatic encephalopathy

Posted by Lisa @techi, Sep 7, 2017

Yesterday l saw my neurologist at the Mayo Clinic she told me some good news that l don't have frontal dementia and l was suppose to see another neurologist and psychiatrist/ psychologist and l was able to cancel both appointments. But a vascular disease doctor l saw before her was talking about one of my stunts being wide but he didn't know how wide so l had to have a ct of my stomach and pelvis to see how wide and if they would have to do anything. So he put on my notes that he will have to talk to a gastenerologist for a second opinion. Well l thought that was great. Then l started itching this morning and l had to take a shower and put on my cream from the dermatologist. Then l looked up hepatic encephalopathy which l do have and it seemed like the neurologist sounded like she wasn't saying anything that seemed right to me. When l asked my husband he said she sounds like she's being careful what she's saying because l have been misdiagnosed a lot. When l was reading the stages it seems like l have symptoms of all 4 but she said that maybe sometimes your ammonia levels fluctuate. Which l can see that. Then my general practice doctor referred me to a liver clinic instead of a gastenerologist. And l was reading that when you have stunts you are suppose to be seen every month then 6 months and then if everything is alright maybe you can see the doctor every year just to make sure you have no problems with the stunts. After my shunt was put in l saw my gastenerologist once and then he said he was retiring and asked me which of his partners l wanted to see. I tried to make an appointment because he didn't say it was a rush he said l could see him next year. Then when l tried to make an appointment they wouldn't schedule me an appointment because l owned them 62.00. And l really wasn't in to much of a rush since all my other hospital bills. So now l tried to make an appointment again since the Mayo Clinic was asking me about seeing a doctor at home. They called me and scheduled appointment then l got a call from the hospital saying my general practice doctor is referring me to the liver clinic. So when l asked the question why l am not going to the gastroenterologist l can't get an answer that makes sense. But my ammonia levels are ok so l just don't understand doctors now a days. If you asked a question about your health you got an answer but l guess they know in my case l could sue them. Because l was told all these diagnoses l had and all the meds they gave me that now l am allergic to all these pain meds. I guess l will go natural remedies we didn't have all these problems and l am finding out instead of them helping they are harming you.

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@contentandwell

@adah it does sound like HE and I presume the doctor must have felt that he did if he put him on lactulose. I never had a biopsy for my cirrhosis diagnosis, I believe I had a CT scan. I remember the test -- I had to drink some horrible liquid in three parts and then have a very brief test done -- but it was so long ago, and I am not a medically inclined person, that I forget which test it was!
From what I have heard people experience HE in many different ways. My HE episodes started with a really upset stomach and fatigue. They progressed to being irrational, sometimes minor, sometimes major. For the minor ones, I could sleep it off. The more major ones put me in a hospital.
I hope if it is his liver you are able to get him to a hepatologist. I live in NH and there is only one in the state, two hours away at Dartmouth, but Boston is only 55 miles away so I went there when it was determined that I had cirrhosis. The hospital at Dartmouth does not do liver transplants either.
JK

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What are they doing for your liver?

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@rosemarya

I did not experience hepatic encephalopathy during my liver disease and failure. My doctors kept careful watch on my ammonia levels and they always stressed to my husband to be alert for mental signs where I wasn't acting like myself. He was supposed to report it if he saw signs of it.

Here is what I found from The American Liver Foundation.
https://liverfoundation.org/for-patients/about-the-liver/diseases-of-the-liver/hepatic-encephalopathy/diagnosing-hepatic-encephalopathy/

adah, Have you contacted the doctors about his mental changes? Is he still taking lactulose?

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The dr knows of his mental confusion and yes he is still taking latulose. But has never mentioned HE

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@adah

The dr knows of his mental confusion and yes he is still taking latulose. But has never mentioned HE

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adah, You are asking excellent questions. As a mother, I feel your fear and your concern about all of this.
Does anyone go to the doctor appointments with your son? If not, someone should do this because an extra set of ears and another voice could be helpful, especially due to the mental confusion that he is experiencing.
When is the next scheduled contact with the doctor?

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I do go to dr with him. He is going to have a liver biopsy.
But I don’t think that will tell if he has HE

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@adah

What are they doing for your liver?

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@adah I had a transplant in September, 2016. All better, and life is good. I cannot say enough good about my care at Mass General. I love that place. I know Mayo is great too, but for those of us in the Northeast, MGH is a wonderful choice. If they had not come through for me soon I was about to get on the list at Mayo, but thankfully MGH came through.
JK

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I have been diagnosed with Waldenstrom’s and have slurred speech. Is this a symptom of Waldenstrom’s?
Ray

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