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Replies to "I don't know if l am in the right group. But l was diagnosed with elevate..."
Well so far nothing has gone to my brain. In 1997 l was told l had viral encephalitis. Then when l went to the Mayo Clinic my neurologist Dr McEvoy you might know her. She told me in 2014 in my chart it said l had autoimmune encephalitis, encephalopathy also and so many other diagnoses. She said my neurologist in 2014 didn't read my chart he just assumed l had conversion disorder. So after l went through all these test and doctor which l am very thankful she said l was misdiagnosed So they think it was my ammonia levels that made me fall out, hallucinating, and cognitive decline, also depression. So when l came back home l went to my gp and he doesn't know l went to the Mayo Clinic the last thing we discussed l was going to John Hopkins and l probably would have because l heard about a new encephalitis clinic there in the US. But the Lord had another road for me to go because my appointment was setup right away. So when l told h l needed a new gasterentogist he sent me to a liver clinic that does transplants so l don't know what he's doing. So l really can't wait to get back to Minnesota. My internal medicine doctor always said l want you to come here. So l don't know if l have a fatty liver. No one has said anything. They wanted me to come back this month but when we said November nobody seem to think that would matter. So l pray l don't have to have a transplant but if that's what l have to do then l will. I'm trying to lose weight and keep my pressure and ammonia level down. Which l can't tell because l am not getting it tested regularly. The last time l had my levels checked was in Aug so l guess that's alright. I don't know how often that's suppose to be read. And also the neurologist said my ammonia level may fluctuate. And l think that's very true. It's so weird you can walk alright for awhile and then you may get wobbly or just fall. So then you become a housebound person. So.l am blessed l can get out a few times a week but it always have to be with someone. But even though l really can't complain l am blessed to still be here.
@techi Lisa, have they eliminated the possibility of fatty liver? I had cirrhosis fromn fatty liver which progressed to NASH.
Prior to transplant I did have HE from the ammonia going to my brain. To me that was the worst thing I have endured.
I hope they manage to diagnose you and help you with these symptoms. If you have any questions about HE please feel free to ask.
JK