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DiscussionI'm having multiple odd episodes that are keeping me undiagnosed. Help
Brain & Nervous System | Last Active: Oct 19, 2023 | Replies (203)Comment receiving replies
Replies to "@contentandwell Yeah that seems to be the case with many people. They see multiple doctors and..."
@johnwes5819 John, I had non-alcoholic cirrhosis, also called NASH cirrhosis and caused by fatty liver that has not been diagnosed. Apparently, I had it for many years (10 was suggested by the hepatologist) before it presented itself. I had some other symptoms, like a low platelet count, shaky hands, and others that seemed unrelated to anything. Then I suddenly had an episode of confusion. The PCP I had at the time called me on the phone and told me she thought I had Alzheimer's! After that first one I had more, every few weeks or so. They thought these episodes were a neurological problem, thus the neurologist involvement. He literally scoffed at the idea of Alzheimer's.
It took almost a year and a half after the first episode of confusion before I was finally diagnosed. The confusion episodes are called hepatic encephalopathy (HE). By that time I had a new PCP but he too did not diagnose the problem despite multiple symptoms that I discovered afterward were all typical of cirrhosis. A few of these episodes put me in the hospital and that was when the neurologist suggested liver, so they did an ammonia test and sure enough, my ammonia level was high. When you have cirrhosis your liver is not processing things as it should. Normally it would filter out the ammonia but when it does not, it can travel to your brain and cause HE.
Please feel free to ask any other questions you might have.
JK