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Lisa
@techi

Posts: 318
Joined: Jun 18, 2017

Hepatic encephalopathy

Posted by @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.

REPLY

Once again another er visit. Last week l had to go to the er with slurred speech., shaking , unable to walk and unable to write. They took me back to the room right away because they thought l was having a stroke. The nurse came in and the doctor. He told me all the test they were going to run. Now l thought all my symptoms were due to my ammonia level being elevated since it been previously. After running all the test 4hrs later he comes in the room and tells me your ammonia levels are normal and all your test came back normal. Then the next day tl get a message about a new test result. It was an abdnomal ekg. Now they told me everythin was normal. What happened?? So l was going to call my doctor but hes ready to retire and l was going to call the hepatologist but he will probably say see your doctor first. I dont know why it happens and they cant explain what it is. I am finally babysitting my grandson and l.am so scared l can drop.him or cant walk or l cant even get up to get help. Its a little frightening but my faughter want me to continue to take care of him because she knows l miss having my grandchildren by myself. Has anyone feel that way???

Hello @techi, you may notice I merged your discussion with your existing discussion on hepatic encephalopathy in the Brain & Nervous System group. I would like to invite @teresatopeka and @contentandwell to this discussion on side-effects of hepatic encephalopathy as they have talked about experiences with this diagnosis.

@techi, if you don't mind me asking, do you see or have you seen a neurologist regarding your encephalopathy due to your liver issues? It may also be in your best interest to let your hepatologist know the symptoms you are experiencing.

Last sunday l had to go to the hospital with slurred speech, tremors and unable to walk. They thought l was having a stroke but l didnt think that. I thought it was my ammonia levels but they said it was normal. They did the whole work up for my brain. They said everything came back normal but l know if you have encephalitis or encephalopathy it can come back normal but you still can have a problem. On my discharge papers he put on there l was giddy. So l was wondering what that meant. Then they put on my insurance abnormal ekg. Then the same week l couldn't swollow back again to the hospital and they said l had strep throat. Then that same week l fell and fractured my ankle. When l was reading about hepatic encephalopathy they said that doctors are misdiagnosing patients.. So l texted my doctor and he hasn't texted back. And l know hes getting ready to retire but for years he didn't know what was happening. From having just encephalitis then told you have autoimmune encephalitis and encephalopathy also hepatic encephalopathy.. So now l am back to where l started and l was doing fine for almost a year. When l went to the Mayo Clinic everything came back normal but the liver doctor said one of your shunts there is blood slowly dripping but nothing to worry about right now. And he said if you have problems come back to me. I really liked that but being 12hrs away is not a walk in the park. But as far as my memory for years having difficulty resembling l am blessed that came back after 18yrs. The doctors cpuldnt believe my memory came back. Now thats truly a blessing. And from all the falling in these past 20yrs l have had so many surgeries but they still cant figure anything out.

@redhead63 l went to the Mayo Clinic last year. I had to go 4 times. They said my ammonia came from different meds the doctors were prescribing to me. I believe that because l was allergic to codeine for over 35yrs and now l am allergic to so may meds the doctors hate to prescribe me anything. We always have to go through my allergy list even to the doctors l see regularly. And l know if for protection. And then l was told it was because of my autoimmune disease. And then it was because previously l had herpes. But anyway when they tell you to be aware of a bloated stomach, jaundice, nausea and confusion bit to have your ammonia levels checked if you have any of these oroblems it could be your liver. Well thats great, you can't just check it at home. Or it can be the shunt because blood is slowlh dripping then its a little confusinv. And they also say if your stomach starts bloating get help immediately even if nothing. Then if you go to the er they think you ate overreacting. Then what do you do? Then they say if you do go to the er the blood can travel to the brain or you can go into a coma and at worst serial death then thats not what you want to happen. And with my encephalitis l already had inflammation of the brain and almost died. I am definitely blessed that didnt happen.. So l was told it was autoimmune encephalitis which can affect your liver so thats when its autoimmune encephalopathy. Then on my diagnoses its hepatic encephalopathy no ? Oma or it could be no cirrhosis. Which l really wasn't a drinker maybe once in a year if l went on cruises but that is definitely out. Do you take lactulose? Because they say if you have an odor in your mouth your liver can be high so have it checked out.

I hope everyone had a happy new year despite what the year before we went through. I have to count as all join lmade another day. I just came out the hospital on the 27th for psychosis, bipolar but why l was admitted? I notified my doctor at the mayo clinic for my xifaxan. I had ran out. He's the greatest. He called it on December 11th. I was having psychotic symptoms and was admitted on the December 16th. I missed Christmas with my family just because they couldn't see l was having symptoms of HE. So he called in my med for 550mg and on the 27th the neurologist calls in 250mg of the same meds. I went to the pharmacy yesterday to pickup my med but is was closed for the new year. So today l called the pharmacy to pickup my meds and he tells me the one from the 11th is ready but the insurance for the one on the 27th the insurance doesn't want to fill. Ok l understand that exactly but because of the doctor negilance l missed Christmas with my family. And l lost my mother last year also. But to keep my sanity l have to count all joy!!! Because Jesus was the reason for the season not me. So tomorrow l go to see the psychiatrist and l pray God will put a seal around my mouth just like he did abraham before sarah had a first baby at 90. Just Pray for me. And l am so blessed today my adopted grandson from church wants to spend the day with me on Friday. He has autism but he's such a blessing to me because he just loves me and waits for me to come to church. That gives me joy and l know each pain l suffer is all worth it

@techi

I hope everyone had a happy new year despite what the year before we went through. I have to count as all join lmade another day. I just came out the hospital on the 27th for psychosis, bipolar but why l was admitted? I notified my doctor at the mayo clinic for my xifaxan. I had ran out. He's the greatest. He called it on December 11th. I was having psychotic symptoms and was admitted on the December 16th. I missed Christmas with my family just because they couldn't see l was having symptoms of HE. So he called in my med for 550mg and on the 27th the neurologist calls in 250mg of the same meds. I went to the pharmacy yesterday to pickup my med but is was closed for the new year. So today l called the pharmacy to pickup my meds and he tells me the one from the 11th is ready but the insurance for the one on the 27th the insurance doesn't want to fill. Ok l understand that exactly but because of the doctor negilance l missed Christmas with my family. And l lost my mother last year also. But to keep my sanity l have to count all joy!!! Because Jesus was the reason for the season not me. So tomorrow l go to see the psychiatrist and l pray God will put a seal around my mouth just like he did abraham before sarah had a first baby at 90. Just Pray for me. And l am so blessed today my adopted grandson from church wants to spend the day with me on Friday. He has autism but he's such a blessing to me because he just loves me and waits for me to come to church. That gives me joy and l know each pain l suffer is all worth it

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Hello, @techi – I wanted to let you know I've moved your new post on hepatic encephalopathy to this discussion you started previously. @contentandwell @godlygal and @rosemarya may have some thoughts on your feeling that you were having symptoms of hepatic encephalopathy and feeling misunderstood by your care providers.

@techi

I hope everyone had a happy new year despite what the year before we went through. I have to count as all join lmade another day. I just came out the hospital on the 27th for psychosis, bipolar but why l was admitted? I notified my doctor at the mayo clinic for my xifaxan. I had ran out. He's the greatest. He called it on December 11th. I was having psychotic symptoms and was admitted on the December 16th. I missed Christmas with my family just because they couldn't see l was having symptoms of HE. So he called in my med for 550mg and on the 27th the neurologist calls in 250mg of the same meds. I went to the pharmacy yesterday to pickup my med but is was closed for the new year. So today l called the pharmacy to pickup my meds and he tells me the one from the 11th is ready but the insurance for the one on the 27th the insurance doesn't want to fill. Ok l understand that exactly but because of the doctor negilance l missed Christmas with my family. And l lost my mother last year also. But to keep my sanity l have to count all joy!!! Because Jesus was the reason for the season not me. So tomorrow l go to see the psychiatrist and l pray God will put a seal around my mouth just like he did abraham before sarah had a first baby at 90. Just Pray for me. And l am so blessed today my adopted grandson from church wants to spend the day with me on Friday. He has autism but he's such a blessing to me because he just loves me and waits for me to come to church. That gives me joy and l know each pain l suffer is all worth it

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@techi. I’m a little confused. Have you been diagnosed with non-alcoholic cirrhosis, also referred to as NASH cirrhisis from fatty liver? I assume you have if you are having confusion episodes, HE. If so, your family needs to learn about HE and the other symptoms you may have. Someone in your family should accompany you to the doctor to learn about it, or at least speak to your doctor.
I had HE episodes, some minor, some major that put me in the hospital. These started happening before I was diagnosed with NASH cirrhosis. My family was very concerned, the PCP I had when I had my first episode thought I had Alzheimer’s, which a neurologist scoffed at, but because I didn’t have some symptoms that are common with liver problems such as jaundice and out of range AST and ALT numbers, my PCP (a new one, not the one who suggested Alzheimer’s) could not figure out what I had, and sent me to the neurologist. He, after a couple of appointments suggested my problem was my liver and after tests, cirrhosis was finally diagnosed.
Prior to the diagnosis though my family was extremely concerned and had no idea what was wrong. I’m sure your family must also be concerned and if they speak to your doctor maybe that will help them to understand.
I hope your family will learn more so they can help you through this ordeal and understand HE episodes.
JK

@contentandwell

@techi. I’m a little confused. Have you been diagnosed with non-alcoholic cirrhosis, also referred to as NASH cirrhisis from fatty liver? I assume you have if you are having confusion episodes, HE. If so, your family needs to learn about HE and the other symptoms you may have. Someone in your family should accompany you to the doctor to learn about it, or at least speak to your doctor.
I had HE episodes, some minor, some major that put me in the hospital. These started happening before I was diagnosed with NASH cirrhosis. My family was very concerned, the PCP I had when I had my first episode thought I had Alzheimer’s, which a neurologist scoffed at, but because I didn’t have some symptoms that are common with liver problems such as jaundice and out of range AST and ALT numbers, my PCP (a new one, not the one who suggested Alzheimer’s) could not figure out what I had, and sent me to the neurologist. He, after a couple of appointments suggested my problem was my liver and after tests, cirrhosis was finally diagnosed.
Prior to the diagnosis though my family was extremely concerned and had no idea what was wrong. I’m sure your family must also be concerned and if they speak to your doctor maybe that will help them to understand.
I hope your family will learn more so they can help you through this ordeal and understand HE episodes.
JK

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I believe my son has HE
He gets very moody and screams out curse words, something he never has done, gets angry. His ammonia level was high, they put him on lactulose. Waiting to get liver biopsy. Can you explain in more details what symptoms go with HE. And how can catscan miss HE?

@adah

I believe my son has HE
He gets very moody and screams out curse words, something he never has done, gets angry. His ammonia level was high, they put him on lactulose. Waiting to get liver biopsy. Can you explain in more details what symptoms go with HE. And how can catscan miss HE?

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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?

@adah

I believe my son has HE
He gets very moody and screams out curse words, something he never has done, gets angry. His ammonia level was high, they put him on lactulose. Waiting to get liver biopsy. Can you explain in more details what symptoms go with HE. And how can catscan miss HE?

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@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

@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?

@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

@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?

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

@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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