Portal vein

@rosemarya Rosemary yesterday I was,driving and I got dizzy and started Jenkins the car because I didn't want to have an accident, And this has never happened before but I got dizzy. When I parked in was afraid to get out the car and to continue to drive home. I called my husband and then my son because I just couldn't drive. When my son came I was stumbling I couldn't walk l was having problems with my balance. Then I got home and was holding on to the wall to get into bed. My hands were shaking and that has happened before. Not able to walk normal and hands shaking. I told many of my doctors about this and they kind of blow it off because they have ran test and they say you are not having a seizures. Just recently I was up l couldn't sleep after my dogs woke me up that's normal. But I read a document on the computer about non-hepagic encephalopathy. And they said all your test can come back normal and you still have encephalopathy. That a doctor must really test further. And they have to listen to the patient and family to give them more insight of what's going on. So today I really didn't know what doctor to call. Even though you might want to go to your gp they don't specialize in that type of illness. And I call my hepatologist but I don't know if he would be the one to talk to. And I don't have a neurologist because they say I am alright which I sometimes wonder about them. But I just want to know if this has ever happened to you? And if this could have something to do with your liver. Which I don't know about that but you would since you have had liver problems.

@techy, Lisa, you did the right thing to park your car and to call your husband and son for help. I shutter to think of what could have happened.
In answer to your question, no, I have not experienced what you are experiencing.

I would like to suggest that you re-read your response to me from December 29, 2017. Just scroll back on this same discussion. I think that that is a better answer that I can write, and it is a concise summary of what you have already learned.

Lisa, have you considered giving up driving? Not a real friendly thought, is it? But maybe for your safety and the safety of others, it is time to seriously consider it. It sounds like you have family nearby, and maybe some friends who will help you get around safely.

Lisa, are you using a cane for walking, yet?
Rosemary

@rosemarya Rosemary I just started driving again after 2yrs. I've been driving fine taken people places and shopping but all of a sudden that just happened. And I haven't s t armed using my cane yet but I guess I will definitely do that. I know the doctor l saw said it would fluctuation but from what or why? And the answer I get is its the residual of the hepatic encephalopathy. And does that mean your life is just at a standstill. Well I just can't except that and maybe that foolish but that's not me. I wanted to tell the doctor what was going on and if I might need something. But which doctor? My gp doesn't specialize in that. The neurologist have said I'm ok because all the test come back normal and this new hepatologist is good but is this what he's familiar with. So it's like a catch 22. And to get around in this state is like you are in the stone age. So that why I really want to know why I keep falling, that's what I came to the Mayo Clinic for and the answer is your encephalopathy will fluctuate and it could be when your ammonia levels is high. The last time I had my ammonia levels checked here was in 2015 and when I fell in 2017 they didn't even check. So at the Mayo Clinic they checked it was normal and when I saw the gastroentologist here he said I can look at your face and hear your speech and it's normal. So that's why I was reading about non-hepagic encephalopathy. It was very interesting so I guess I have to give the doctor the article where some doctors did research and found out about how it can be mistaken that the person has nothing going on when actually there is.

@techi this is such a difficult dilemma. My first thought was to contact your hepatologist but the mention of your neurologist made me think again. I went almost a year and a half without a diagnosis, having HE episodes occasionally with no explanation for what was happening. My PCP sent me to a neurologist because he felt it was something going wrong in my brain, like seizures or whatever. The neurologist was stumped initially, thought it could be from having been a severe migraine sufferer prior to menopause, or perhaps some type of seizure but those were not really definitive of my problem. He was the one to first say he thought I might be having a liver problem. I ended up in the hospital from an HE episode and they tested my ammonia, first time that was done, and it was high. So that was what finally pointed to my cirrhosis.
If the hepatologist is good I would go there first. After my diagnosis I went to a hepatologist and she was great, felt that I had cirrhosis for about 10 years which would coincide with when my platelets started dropping. I realize all hepatologists are not the same but I would have huge confidence in her.
JK

@contentandwell Thank you so much. You understand about what you have to go through with these doctors. I have been getting dizzy and I am off balance and my hands tremor and I can't pickup anything so that's why I didn't know if anyone had the same problems. I have been trying to get anyone to tell me why this is happening. I really think I have non-hepagic encephalopathy. I really don't know if that would eventually go to HE or what but when I saw the neurologist at the Mayo Clinic after all the test coming back normal she really b didn't know what to say when I had all these misdiagnosis and then I had to see the hepatologist. So I have been going to neurologist and I had to let go 5. And this new hepatologist is do like and I am praying he can tell me what's going on. I sometimes think it's seizures but they say I have non-epieptic seizures so I have my information I have to take to the doctors. This is crazy. I always say I should have been a doctor. Thank you so much JK.

@contentandwell This week l went back to my new hepatologist and he said l read your whole chart and he said you had so many doctors tell you so many different diagnoses so he told me you only need to see me and your PCP because everyone is telling your what you have and its so confusing. I can see that. He told me right now we dont need to do you procedure over again. I have ordered your blood work and everything is fine and now l will order an ultrasound to make sure the blood is flowing correctly and also to hear it. If everything is alright l will let you know. I got the phone call yesterday and he said everything is fine and we will schedule you to come back in one year. Loved it.. he said if you have any of those symptoms you had call me and we will get you right in. I told him about the rheumatologist and the medicine he gave me that l had an allergic reaction and when l called him back the nurse said go to the er you might be having a stroke. I knew l wasnt have one but l said l would go because if l didnt they would have that in my records. He told me you ana can be high and it can be due from your ammonia levels so l will call him and let him know. Finally a good doctor as far as my PCP l amooking for another one. The receptionist when we were talking she said leave him. When he not listening go. Then my sister was in the hospital for a week with confusion and the symptoms l had at the beginning of things l was doing. They said first it was all these neuro th hings then dementia and then onset Alzheimer. Then when she took her records to the PCP he did nothing andvwhen l went to get my booster he ask me about her issues which was odd. He had her record's. She didnt get a referral from him she went back and now hes referring her to the same neurologist he gave me who did absolutely nothing. And shes been having headaches when she was admitted to the hospital which is 2wks ago. And the neurologist cant see her for 2months. I think that is absolutely crazy. We have the worst medical system in 48 other states. So l was so blessed to find this new doctor and he was able to see me so fast. We have a shortage of neurologist. And you want to hear something crazy my little dog who has been through all this with me who would lay next to me when she knew l wasn't well. Now she has something wrong with her liver we think her test came back high levels. So now l have to nurse her back to health. I guess we both have to change our diets and drink smoothies. I also found out she can take some of my milk thistle. (I hope not) well thank you for your support.

@techi Lisa, it sounds like things are finally progressing well for you. I am glad you have found a doctor in whom you feel confident. I know from personal experience how difficult it is when your doctor seems to be in the dark about what is wrong with you. I went through that for too long myself, and it was finally my neurologist, a wonderful doctor, who suggested that my symptoms were probably from a liver problem! He of course was right. What was the hepatologist's diagnosis?
Also, what state are you in that has such a lacking medical system? I am in NH and have found that things here are not as good as I once thought they were, but there are some good doctors. Fortunately I am 55 miles from Boston (an hour without traffic, but we leave two hours in mid-day) and the medical care there is among the best in the world so I am turning more and more to doctors there.
JK

@contentandwell JK hepatologist name is Dr.Kalodiah I have a hard time saying his name but he doesn't care. I live in Oklahoma. He told me you don't need to see a neurologist, psychiatrist only one you need to see is me and your PCP. Well when l checked out l was talking to his receptionist about my PCP and she was telling me about her. She said if you doctor won't listen t o you or does want to learn about your health thats affecting you. Drop him now!!! So now l am looking for another doctor. I use to live in NY and I was thinking about moving to MN or Boston. Ive been here to long and l have no trust in the medical system here because in 1978 l was diagnosed with shingles and they just started talking about it in the last 8yrs. And l had a brain injury for 21yrs. I been haing problems with memory, falling, seizures and so on. And l couldnt take it anymore with trying to get doctors to listened so l was crying and praying in church Lord please give me my memory back. And l did get that and its truly a blessing but they are scared because all of this didnt have to go this way or maybe it was autoimmune encephalitis. So all the doctors l.dealth with are watching themselves. And l am trying to get this out about encephalitis, autoimmune encephalitis and also encephalopathy. My sister had a fluid in her house and they stained furniture that was damaged in the house. She was in the hospital for 5days and can't see a neurologist for 2months. And she has headaches everyday. And the doctors here say we have a shortage of neurologist here and we are trying to get more. And l told her that the reason she was having these problems was because of the fumes from the stain. No doctor could see that and now she has to suffer and right away they say its dementia. Oh the hepatologist diagnosed me with hepatic encephalopathy

@techi it really does not sound as if the medical care is good there. I too would consider moving. We are in southern NH and although we have a few good doctors, too many of them are sub-standard so I go to Boston more and more. We hope to sell our house sometime soon and I am thinking that maybe we should move closer to Boston since as we get older the driving is a real nuisance. Of course it will cost much more to live there though than up here.
If the hepatologist diagnosed you with HE what does he/she think is causing it? If I recall correctly it was definitely determined that you do not have cirrhosis. I know my HE episodes were caused by ammonia getting to my brain due to cirrhosis -- my liver was not filtering it out. What are the other causes? It's a very frightening thing to have, I sometimes still get tears in my eyes when I think of it.
JK

@contentandwell I have never seen a medical staff as so clueless as the doctors here. And to get appointment its very hard because the doctors are retiring or leaving the medical profession altogether because of our healthcare system. But my Hepatologist said l had HE and elevated LFT but he said everything ok right now. He ran a mri and all my lab works. And he set my next appointment in a year and l can see all the things he wants you do before you see him. I have to have lab a week or 3days before my appointment and the the day of my appointment a MRI then you see him. And the hepatologist at the Mayo Clinic said one shunt the blood is dripping so little hes not worried right now. The hepatologist thinks my HE is from my brain injury, first viral encephalitis and then its autoimmune encephalitis. Thats because my ana is extremely high but they say my HE is not active but just fluctuating from previous infection. Its been such along time it all started in 1997. But seemly its doing okay but they are watching me because what l am going through its like its active. And also one shunt the blood is dripping real slow so they are not ready to do the procedure again. I dont know if they think they would have to do my TIP procedure again or if it might get worse that l might have to have another form of treatment. They can do a different kind of procedure before they have to talk about transplant. Then the doctors here thought l was having MS, carpal tunnel and l was psychiatric because of falling and hallucinations. I told them if you fell as much as l you would hallucinate. Then a psychiatrist said l was depressed and l had anxiety. I asked her has she ever been depressed? After that she was finished with me. And all these are symptoms of brain injuries, liver disease, autoimmune disease and so many other diagnoses. And when you are trying to tell doctors whats going on and they dont listen then you would be depressed or have anxiety. Everyone goes through that except Jesus. So sometimes l am not very liked b y doctors because l have to be my own advocate and not let them feed me all their junk. If you dont know l am okay with that just dont waste my time or money. And it seems like when you go to the doctor everyone has to run all these test instead of just looking at your reports and the one that are abnormal then do those over again. If you move to Boston are you going to go to john hopkins? I was going to go there first but l was having problems with my doctor referring me there. Then l called the Mayo Clinic and l had an appointment in 2wks. I wasn't denied and have to get a referral. And l am getting information from the liver foundation. I want to find about all the latest treatments. Have you already have a transplant? I am not at that point and my hepatologist is not talking about that right now. So l am trying to learn all l can because l know that not easy to go through. A good friend of mines is on the kidney list and he doing dialysis right now so l try to lift him up. He had a transplant before so l dont know if he has to wait longer. I know now they are doing transplant on living donors. They say rejection is very low and you usually dont have to take meds for rejection. So l will be praying for you to get better. Have a good evening.