Doctors who need help or maybe patients
I went to the mayo clinic last year and all the diagnoses that my doctors gave me were ruled out except my portal vein, and autoimmune encephalopathy. Then in the last three months my ammonia levels were elevated. I was taken off my lactulose and then put on it again. So the last reading was 58 and it was supposed to be no higher then 51. So my hematologist gives me another med with the lactulose. Zifaxan okay. The first evening everything was fine the next morning l took one and it was a disaster. I threw up couldn’t get out of bed to go to the bathroom. I had to call my daughter. I continue to throw up. I never in my whole life threw up that much. I began throwing up bile.The next day l was so weak l could do hardly nothing. On Monday l went to my rheumatologist and l checked in and then had to fill out paperwork. As soon as l took it back l fell and l have a boot on from a fractured ankle. I was so embarrassed. The nurses helped me my mouth was bleeding. Now l was doing okay up until that point. My husband call my liver doctor and he tell us to come to the hospital. That wasn’t what l wanted to do but my husband insisted because I was still throwing up and he thought it was my ammonia levels. Everything came back normal but they wanted me to be admitted. I told the er doctor l wanted to go home but she insisted and my husband wanted me to be checked out. Now she said my ammonia level was 22. 2 days l needed help just to go to the restroom. Then they ran a EEG it came back normal so the neurologist who l wanted to have nothing to do with but since l seen him last had to see him and the liver doctor both said everything checked out normal. Now they gave me Keppra IV and as soon as the nurse started as l felt it going through my body l felt my chest burning. Then my hands started to tremor. I tried to call the nurse but dropped the call light. I tried to press the call light on the bed but my hands were shaking so much l couldn’t do it. Then l finally got a hold of the nurse now l dont know if it was a seizure or allergic reaction because my head began shaking and then l don’t remember what happened next but when l woke up l was alright. Then the next day they gave me something and l was trying to text my daughter to bring me something for breakfast and l couldn’t text her. When she came to bring me my breakfast she said l couldn’t understand what you were texting me. So l had to call my husband to tell her and he said my speech was slurred. So we were all frustrated with the doctors because they kept saying everything was fine. I kept asking them about my ammonia levels and it was always normal. Just to find out the only checked it twice. Once before l was the admitted and again when l was discharged. I called my gastroenterologist at the mayo clinic because he said if this happens again come back to see him. Easy said then done 11hr driv ed but now l know it’s worth it. So we told him what happened and he said to ask the doctor to run a test because one of the shunts in my liver is leaking blood slowly so he wasn’t very concerned right then to replace that shunt. So he told us they might not do it because l had gotten a second opinion and the mayo clinic found something. Now looking at my records the diagnoses that the mayo doctors ruled out l all of a sudden got it again. And now depression, and anxiety. And diagnoses l never knew l had now its TIA, a trophy and chronic microangiopathy and the mayo doctor ruled that out, frontotemporal degeneration after the l had a PET at the mayo clinic the results normal. A 4hr memory test at the mayo clinic and it was normal. My memory is absolutely fine and then they put neurological/behavioral symptoms. Oh and the doctor at the mayo clinic put possible autoimmune encephalitis they said on some sheets l had previous encephalitis and then ? encephalitis. I was diagnosed with encephalitis since 1997 at the hospital l worked for and yes at the beginning l had issues because I came of my medicine and also l was given so many meds when l was admitted to the hospital in 2014 that’s when l had problems with my liver. Never had any problems with my liver nor nobody in my family. Then on my records they said l fell at my orthopedic instead of my rheumatologist. I had physical therapy come and it was a she and they said he. The doctors discharged me and then they said patient and family insisted to be discharged. Then when l showed the nurse how l was texting she tells me yes that’s one of the symptoms. Then l am allergic to aspirin. I have been for years since about 2005 and you shouldn’t take it if you have liver disease and what does the doctor tell the nurse, it okay for her to take it. I told her l bruise when l take aspirin and sure enough l had bruises. Thank God l have pictures of that. So all and all l just thank God for his grace because if not l probably be dead. So l am glad my gastroenterologist at the mayo clinic can see mr so if l need to have my shunt replaced l don’t have to have it done here.