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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.


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 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.

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