• over 1 year ago

    Doctors with no idea of what's going on.

    I was diagnosed in 1997 with viral encephalitis. I had memory issues, falling and sometimes speech problems. In 2014 was diagnosed with elevated ammonia levels, seizures and post encephalitis. I have been falling very frequently. In fact l just fell in my doctors office 2 1/2 weeks ago and l was recovering from a fractured leg which is not the first time. My first neurologist after my first TBI said l had partial seizures, the next carpal tunnel and Parkinson's disease. And my last one non epileptic seizures and conversion disorder. Now l.have fallen so many times it unreal and lots of places. My hands trembling, slurred speech, balance issues. Sometimes have one of my family member to help me go to the restroom. I finally got tired of my doctors because you are trying to tell them something is wrong and they come back with psychotic, bipolar and schizophrenia. And l been to rehab constantly in patient and outpatient. Matter fact l am going now. I had so many surgeries from falling it should tell the doctors something. I have autoimmune disease. One is encephalopathy because of my liver. And l was told before after my biopsy l didn't have cirrhosis and after this last hospital admission on my records it say l do but the doctor said everything was okay. So when l did my research l have the same symptoms of autoimmune encephalitis, when l went to the mayo clinic they said possible because l wasn't showing signs at that time. But their only 2 doctors there that specializes in it. But l definitely have autoimmune encephalopathy. I take lactulose for that. Then my neurologist that l stop seeing since l went to the hospital he works in when l was admitted l had to see him because he was the last one l saw. Now when l fell in the doctors office l hit my mouth and it was bleeding. And l thought it might have been my ammonia levels since it's been high for the last 3months and it was high 3 days before l fell. Now l had to have help for 2 days to get out vfc the bed to go to the bathroom. I remember one evening the nurse said she was giving me my keppra by lV. As soon as she gave it to me l felt a burning but l thought it was running to fast but it wou lm d be okay. Well it wasn't so.l tried to ring the call light to get help and l drop the hand control because my hands were temor so l tried to hit the call light on the bed but l couldn't. Then l felt my head shaking. The nurse came in and l didn't even know how she knew l was having a problem. Then l just blanked out. Now after all this was over l felt fine. I don't know how long this was going on. The next night it happened again l was told
    I don't know if it was meds or a seizure. Then when it was over l tried to text my daughter to bring me something for breakfast but when she saw the text l couldn't understand and she told me she couldn't either. So l called my husband since l couldn't text and that was hard too. I had problems touching the numbers on my cellphone but l didn't give up. When he talked to me he couldn't understand me because he said my speech was slurred and this happens quite often. I don't know it but other people tell me that. So
    I was always asking the nurse about my ammonia levels and they were checked only twice. When l was in er and when l was discharged. Then the neurologist comes in to discharge me and he said everything came back okay. He's crazy he needs to go back to medical school because if you have autoimmune encephalitis they said everything can come back okay even your EEG. I got that from the UK and also the autoimmune encephalitis alliance that's the mayo clinic site and a women wrote a book on it she went through the same thing. They are now taking about it and trying to educate doctors because a lot of people have been diagnosed with mental illness which they said could have possibly had or have it. Now when l was discharged l didn't sign any discharged papers and the nurse gave me no instructions. I showed my text and she told me yes that's one of the symptoms of autoimmune encephalitis. So now get my discharged papers and they have on hepatic encephalopathy with cirrhosis, hepatitis C, TIA, fronta lm dengentive disease which was ruled out at the mayo clinic, conversion disorder, non eplipetic seizures, depression and other things but everything was normal. My daughter called the mayo clinic and she told me liver doctor there what was going on. He told her to ask the doctor there to run a test since one of my liber shunts is slightly open snd blood was wasnt flowing. Then he said they might not do it because you have gotten a second opinion and they found something. He was definitely correct on that one. Oh forgot to say twice they gave me aspirin and l been allergic to it since 2005 and it's on all my records and so l got bruises on my legs. So today l am going to see my gp and then in October l go back to the mayo clinic because the doctors here are so blinded about diagnoses at least the ones l have gone to except 3 since 1997- 2018. I have been given meds from the doctors and pharmacy that were recalled. Thank God for wisdom. And l can say for 19yrs with memory problems and lots of prayer l can remember a lot and l am writing my first book about what l went through.