What type of encephalitis? Autoimmune, limbic, or encephalopathy?

Posted by Lisa @techi, Jul 31, 2017

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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@techi

Today it's thanksgiving and l am so greatful that God is showing me so much about my illness. I have been to two autoimmune doctors one at home and l was told l have a positive Ana and was tested twice and l was told l had a positive Ana. That was all no other answers about what that even meant. I went to the Mayo Clinic and saw a rheumontologist and she ordered several test and the neurologist also said l had a positive Ana. Then she told me to cancel my appoint with the rheumatologist. Then she told me my previous neurologist didn't look at my diagnoses where it said autoimmune encephalitis. Now my gastenerologist knew because he had me to go to the rheumatologist without me knowing until they called me about an appointment. When l was seen by the neurologist at the Mayo Clinic l suspected she didn't know about autoimmune encephalitis because she said that my behavior was the residual of autoimmune encephalitis. Well l looked up and found out there was only two doctors at the Mayo Clinic who specializes in autoimmune encephalitis disease. I know God was with me because l did my research and found the autoimmune encephalitis alliance. This morning at 3am l was looking at my email and l saw a message from the autoimmune encephalitis alliance and they were talking about the seizure medicines l was taking and you shouldn't be taking. I stopped taking my seizure meds about 2 months ago because l was told l didn't have seizures when l looked at it it was telling about seizures and how patients are usually give psychiatric meds. When l was taking my psychiatric meds until 2014 because l was allergic and the doctors said it was autoimmune encephalitis even my general practice doctor didn't read my chart. Since then l came off so many meds and now my memory is as sharp as before l had encephalitisthe first time. I can remember people's names who l haven't seen for years. Now my sister is having memory problems and l sometimes have to finish her sentences when she pauses to find the right words to say. I am able to spell words that l couldn't even remember and l was an excellent speller before but now l am having headaches and that wasn't a symptom l always had before. But they talk about headaches with autoimmune encephalitis. Where some people will develop so her where l live there is only one doctor who specializes in autoimmune encephalitis disease and her reviews are horrible so now l have to.travel to another state to get the help l need. And encephalitis was a disease that other countries knew about before the doctors in the U.S. So now l am writing a book about my experience that l have been living with and how l was misdiagnosed for years and how without the Lord l wouldn't have been here today because an autoimmune disease is so hard to diagnoses.

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Hello Lisa @techi, You haven't posted in awhile and I thought I would ask if you had a chance to complete the book you were writing on your experience with being diagnosed with autoimmune encephalitis?

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