← Return to Not sure what I have - keep getting different diagnosis and opinions

Discussion
Comment receiving replies
@techi

Teresa l know how it feels being told about alot of different diagnoses. I one time told my self l don't know if l had more trials then Job. I said l had to look back in the bible but l knew he had more because he lost his children and everything he had. But in 1978 l had herpes zoster. Then in 1997 encephalitis. I kept falling because of my brain injury. I had memory issues. When l kept falling for 5yrs my doctor thought it was mental since l was going to a psychiatrist. I had fell at my brothers house when l was going back home on his antique table. Then l lost control and striped on a plane going home. I was put in a mental hospital for how long l don't know because l was unconscious and l know it was the meds they gave me. After telling my doctor for 5yrs l was falling he thought l was depressed, bipolar and schizophrenia because that was my psychiatrist was putting on my chart. I said how can l be depressed shopping for clothes, in the water on a cruise, or talking family pictures with my family and also falling outside of his office to see him???. I fractured my ankle and had to stop college for a year. I tore my acl, rotor cuff, and had to have back and foot surgery. In 2014 after coming home from a cruise and seeing my new granddaughter. I fell back and hit my head and was unconscious. They had to take me off my antidepressants because they thought that was the problem. I was told by my children they ran several test. My family, friends and people from my church came to visit and l don't remember them so l don't know if l was unconscious or subunconscious. I was in the hospital for 12day and in intensive care. My family said l had seizures and the doctors said they didn't see anything on my ct, mri and other test. The l had elevated ammonia level , and l never had anything wrong with my liver before. I only remember being in a dark room and feeling restraints. I don't know what happened. My diagnoses then was autoimmune encephalitis, encephalopathy, seizure, elevated ammonia, mental disorder and other diagnoses. They couldn't figure what was going wrong or how to treat me. They told my doctor if l didn't get better they would have to put me in a nursing home. Thank God he was with me because the next day l got better but still don't remember much. Then l was transferred to the hospital that my daughter worked at for rehab. They ran all my test over but there was still something wrong with my liver and they couldn't find the encephalitis or anything wrong with my brain and my new neurologist said l had conversion disorder, meaning a person who is underster stress, anxiety or depression. They will fall, feel numbneds and have non epiletic seizures, and other things that the doctors can't find anything wrong. Then when l was discharged l had to see my gastroenterologist about my liver. After he ran his test he told my you have an extra vein in ypur liver. And he also said l have seen this in medical school but never in a human. Well that makes you feel good. So l had to have a shunt put on the extra vein so what l eat would not go to other parts of my body and organs. When they did the surgery l ask the surgeon how long with this surgery be. He told me the most 1hr if there was any complications. It turned out to be five hrs because l didn't have one extra vein l had five. Then a day later when l went home my daughter was there and l went crazy. I asked my doctor could l.have been allergic to the drugs he said you could have been. Then when l had to go back to see him everything was great but he was retiring. I was sad because he was honest. Dr usually don't tell you what they don't know and that he had to go to his collegues to see what needs to be done. I have continued falling, then l found out l had a postive ana when the rheumtologist office called to setup an appointment. I didn't even know my ana was high. That means l have an autoimmune disease. When l kept falling and went to the hospital it was always someone from the mental dept to come so they could admit me. Then when l went to the rehumatologist she asked me. Why are you coming to see me and who sent you. Well l didn't know what doctor and that was stupid and rude to ask. Why did she have a computer in her office? Then she said my gastroentorogist sent me my ana was elevated. I didn't even know what that was. Its my immune system attacking something in my body but what you have to take many test to find out. So l had to have blood drawn and they couldn't get enough and l had to go again. Her nurse told me no when l called to make sure. Then she wanted to see me right away, when she had a cancellation. Well that didn't sound good to me. Then she tells me its high and it doesn't always me something a healthy person can have a high ana. She could have sent me a letter. Just a waste of my time. Then l was told by one neurologist l have Parkinson disease and carpal tunnel another one MS and the last one coversion disorder. Who would you say is mental? And if your not you would have mental issues. Oh l forgot to tell you one time when l fell lhitmy mouth and 3 of my teeth were lose and l had to have 3 root canals and still my general practice didn't believe me. The last fall was in Janurary l fell in home depot looking for a new washer and dryer. When they called emsa the drivers sas id l was hallucinating. I guess l would l fell so many times l blessed to still be alive. They ran test but they didn't do a CT of my head. When l was being discharged l was never told about the outcome of the test. I had to say something after they said you can put your clothes on and go home. That was very weird to me. I worked in the hospital for 8yrs and never did seen that before. I wouldn't even do that to a stray dog. So l wanted to get a second opinion l was tired. So l going to the Mayo Clinic. I've been there twice and will be going back in another week. I have had so many test done and l had 3 misdiagnoses. And l found out from the neurologist it said there on your chart you had autoimmune encephalitis and your neurologist just assumed you had conversion disorder. Then my internal medicine told me my gastroenterologist wanted me to have an untrasound of my stomach in 2015. Now its 2017 and l will have it done when l go back. Because he said maybe that was causing some of my problems. So l sorry l told you my life history but l know where you are coming from. You get so many diagnoses and sometimes none at all. And your the one with the problem and you want to feel better. I read an article that doctors need to listen to patients instead of giving all these meds and running unessary test because the patient really know what's wrong but can't diagnoses their selves. And you know what l finally learned, they are only human and they don't know everything. So we have to be our own advocate. Do your research look up your symptoms on the computer, its sometimes cheaper than an unnessary visit. I will be praying for Alecia.

Jump to this post


Replies to "Teresa l know how it feels being told about alot of different diagnoses. I one time..."

Hi Lisa @techi

I appreciate your sharing your story - I hope it will encourage folks to keep persisting until they find a diagnosis. Persistence is important!

Teresa