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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Lisa | @techi | Aug 20, 2017

John it will be in the afternoon.l thought that was blessing we were talking about this and three women will be talking about their exerpiences.

Lisa | @techi | Aug 21, 2017

In reply to @johnbishop "Hello @techi, that's an interesting question you posed. I did run across the story - "Mayo..." + (show)

John l am sorry its at 9pm est. Augusr 27th

Lisa | @techi | Aug 21, 2017

In reply to @techi "To everyone who want to know more about autoimmune encephalitis their will be a story about..." + (show)

Its pm.

soccerchick | @soccerchick | Aug 25, 2017

In reply to @johnbishop "Hello @techi, that's an interesting question you posed. I did run across the story - "Mayo..." + (show)

I can't find the program so that I may record it on my dvr. What is the name or title of it?? I know you said Sunday august 27 at 9 pm eastern. Thanks for your help.

Lisa | @techi | Aug 26, 2017

In reply to @johnbishop "Hello @techi, that's an interesting question you posed. I did run across the story - "Mayo..." + (show)

Its on cnn at 9pm est. I forgot the name but its on autoimmune encephalitis. You can look on the website autoimmune encephalitis alliance and it 3 women telling their stories. Hope you find it and set your dvr.

soccerchick | @soccerchick | Aug 26, 2017

In reply to @johnbishop "Hello @techi, that's an interesting question you posed. I did run across the story - "Mayo..." + (show)

Thanks I'll try to find it

Lisa | @techi | Aug 26, 2017

In reply to @johnbishop "Hello @techi, that's an interesting question you posed. I did run across the story - "Mayo..." + (show)

You are well. Have a goodnight.

soccerchick | @soccerchick | Aug 26, 2017

In reply to @johnbishop "Hello @techi, that's an interesting question you posed. I did run across the story - "Mayo..." + (show)

The encephalitis program is on HLN. Channel. It's called "something is killing me". August 27 , 9 pm eastern. I found it on autoimmune encephalitis alliance. Thanks again!

Lisa | @techi | Oct 22, 2017

I just want to ask someone if you had autoimmune encephalitis and you still had symptoms for 3yrs then you are diagnosed with FND because all test come back normal. Then you have positive Ana and rnp is this normal or has anyone had the same thing happen to them? Because when l was reading about autoimmune encephalitis disease they also talk about Ana but the doctors are saying everything is normal but l am the one with not excepting the fact that everything is ok. And when l was diagnosed with elevated ammonia my gastroenterologist sent me to a rheumontologist and l was never told until l was sent paperwork to fill out to see the rheumontologist. I looked at the news one day and they said the doctor should listen to the patient not just assume everyone who has a diagnoses experience the same symptoms. And when l was reading about autoimmune encephalitis they where talking about red flags and yellow flags that the doctors should.be aware of and not take the easy way and say it psychosis.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Oct 22, 2017

Hi @techi,

You will notice that I moved your most recent message to this discussion about autoimmune encephalitis/encephalitis, so that other members with similar concerns can join in and share their experiences which I hope will be insightful for you.

I found this recent update on autoimmune encephalitis, which might interest you, and perhaps suggest some relevant questions to ask the doctors: http://www.japi.org/february_2017/09_ra_autoimmune_encephalitis_an_update.pdf

Lisa, I see from your posts that you are dealing with some frustrating medical and health issues. Despite the challenges, it sounds like you are motivated to keep looking for better answers, and I sincerely admire that. We're here to help as well, and wish you all success.

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