What type of encephalitis? Autoimmune, limbic, or encephalopathy?
I was just looking up online about autoimmune disease and the Lord led me to a site Autoimmune encephalitis alliance. Ive been searching since 2014 what happened to me because after i came back from a womens church cruise and my daughter brought over my new granddaughter i was holding her and thank God i gave her back when i did because only thing i can remember is i fell back. And so i had have so many doctors tell me things that just didn't add up to me. So i would ask questions of my family, friends and even other people who saw me fall and when i try to explain things i knew to my doctors they wanted me to think i was crazy. So when i stubbled onto this website everuthing l have been going through others had the same experience where some doctors would just say it was a mental disorder. So a doctor at Duke did some research because she was seeing people were going through the same thing and getting the same response so she has written a book on autoimmune encephalitis. And now they are trying to educate doctors. B ecause instead of a disease they want to clasify it as bioplar, schizophrenia and even some cases as dementia because of the mental reactions. I was just hopping around praising the Lord a long awaited answer. I also found out there are not many doctors who trat this, it seems like only 2 in the mayo clinic but it might be more since they are educating students as well as current doctors. So in 1997 when they diagnosed me with encephalitis and then in 2014 it was autoimmune encephalitis could it be the same but a continual thing? I guess i will have to do some more searching so i can also spread the word and get the help l need before i can't get completely over along horrify journey. Its a disease and not a mental disorder.
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Well, I have both the disease and the mental disorder.
Well what l was reading its the disease that maybe what is causing the mental disorder because it can look like the mental disorder. After my brain injury l didn't want to come home. I didn't know l had children or lived in a house and l was crying and l went to my sisters house and l remembered her but l don't remember any of that. So their was alot of thing l did that l don't know and when l read the artlices that's part of autoimmune encephalitis. So it could be just that for you or maybe both but it definitley worth looking into and maybe its not mental but for me l know it not because l had encephalitis twice and was told l have an autoimmune disease. And also when l had my liver problems l asked my gastroenterologist why l haave this problem. I never had problems with my liver. I told him that my psychiatrist had me to have my blood drawn to make sure l didn't have any problems with my liver and he told me its the meds. And l definitley believe him because every med l take it has the same allergic reaction that you don't know which one is causing your problems.
Thank you for sharing with me. That is a good point about what you said "maybe the disease is causing the mental illness". I had to rethink about that statement. As of today, I believe I have both problems... that is , both autoimmune encephalitis and bipolar 1 disorder. But I can definitely understand your point. I got diagnosed with the bp first and the encephalitis second. As far as having encephalitis twice...I'm not sure. I think once you have it, then you have it for life, the symptoms just come and go but you still have it. Correct me if I'm wrong. This is what I believe due to talking to all my docs.
Also , I have been tested for liver and kidney functioning before taking any meds and also after taking meds for my psych issues. I think docs do that to make sure all is working before and after. My gastroenterologist says all these meds are bad for my stomach. So, I reckon they are probably bad for liver and kidneys too like you said. I have issues with my stomach. I also have a renal cyst ( kidney)
Techi, I can for sure understand your frustrations. I get frustrated too. My frustrations stem from not being able to treat an illness that I have due to insurance not paying because they say I don't have a a difinitive diagnosis. Thanks for listening, soccerchick
Thanks for recommending lancet psychology. It is great.
I will be definitley praying for you and l am glad that has helped you to understanding about encephalitis and mental illness. It just enlightens you about your illness because my doctors didn't tell me anything and they would talk to my family instead of me because of my memory at that time but l was in church one day asking the Lord to give me my memory back and when l am telling the doctors what they should know they can't deal with it. And l was told for year l had heart disease and enlarged heart. When l saw Dr Miller at the mayo clinic he told me you don't have that you have uncontrolled heart disease and its controlled now and he took me off of one med. So l would call misdiagnoses. So be your own advocate, research and ask questions. I always remind my doctors l have worked in the hospital and graduated as an occupational therapist asst. And l going back to school for speech therapy.
Its lancet neurology. I which l could send it to you but l tried and couldn't. So try to get it and if you don't let me know and l will see what else l can do for you to get the information
I got the info thanks techi. I made an error typing nuerology. I accidentally put psychology .
We all make mistakes. A had a psychiatrist tell me you are depressed and l told her have you ever been depressed? I also had a doctor tell me l had a poor memory and l told him we all have problems with our memory even children. So don't feel bad we all do it. Only God is perfect.
To everyone who want to know more about autoimmune encephalitis their will be a story about thfee lady's who have it and what they are going through. It will be on CNN Aug 27th at 9:00 EST.
Thanks Lisa for posting about the upcoming CNN feature about autoimmune encephalitis on August 27 at 9 EDT. Is that am or pm?
Please note that I moved your message to this discussion in the Autoimmune Diseases so that people would get notifications about it.