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@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.
Replies to "@rosemarya Rosemary yesterday I was,driving and I got dizzy and started Jenkins the car because I..."
@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
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@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