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.

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.

REPLY
@johnbishop

Hello @techi, that’s an interesting question you posed. I did run across the story – “Mayo Clinic unravels a mystery disease for Minnesota lawyer” that may shed some light on your question:

https://medicalxpress.com/news/2015-03-mayo-clinic-unravels-mystery-disease.html

John

Jump to this post

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

REPLY
@techi

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.

Jump to this post

Its pm.

REPLY
@johnbishop

Hello @techi, that’s an interesting question you posed. I did run across the story – “Mayo Clinic unravels a mystery disease for Minnesota lawyer” that may shed some light on your question:

https://medicalxpress.com/news/2015-03-mayo-clinic-unravels-mystery-disease.html

John

Jump to this post

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.

REPLY
@johnbishop

Hello @techi, that’s an interesting question you posed. I did run across the story – “Mayo Clinic unravels a mystery disease for Minnesota lawyer” that may shed some light on your question:

https://medicalxpress.com/news/2015-03-mayo-clinic-unravels-mystery-disease.html

John

Jump to this post

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.

REPLY
@johnbishop

Hello @techi, that’s an interesting question you posed. I did run across the story – “Mayo Clinic unravels a mystery disease for Minnesota lawyer” that may shed some light on your question:

https://medicalxpress.com/news/2015-03-mayo-clinic-unravels-mystery-disease.html

John

Jump to this post

Thanks I’ll try to find it

REPLY
@johnbishop

Hello @techi, that’s an interesting question you posed. I did run across the story – “Mayo Clinic unravels a mystery disease for Minnesota lawyer” that may shed some light on your question:

https://medicalxpress.com/news/2015-03-mayo-clinic-unravels-mystery-disease.html

John

Jump to this post

You are well. Have a goodnight.

REPLY
@johnbishop

Hello @techi, that’s an interesting question you posed. I did run across the story – “Mayo Clinic unravels a mystery disease for Minnesota lawyer” that may shed some light on your question:

https://medicalxpress.com/news/2015-03-mayo-clinic-unravels-mystery-disease.html

John

Jump to this post

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!

REPLY

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.

REPLY

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.

REPLY

I have had problems after my TBI with memory especially. and then when I found out I had liver issues that was another problem. When I went to the Mayo Clinic they though I might had have frontal dementia and that’s because it runs in the family. I took the 4hr cognitive test and also the PET and I have been having issues with memory since 1997. Even when I went to college I had tutors, my work in audio and just before a test I would have to have someone go over it with me. I told the neurologist my memory has improved and I also told my other doctors. They didn’t believe me because I was telling them information they didn’t know. I would look it up on the computer and I would give them the information where they could look it up. We’ll my doctor definitely didn’t like that because I was telling him things he didn’t know about my illness. so after the PET I was told it was normal. I first started out when I got out the hospital watching wheel of fortune. I watch it every night except when I am on vacation. When I am out I have to hurry to get home to watch it and God has blessed me. I have 2 young men who have autism every Sunday they come and sit by me at church. One is 19 and he’s still in high school he couldn’t read and hated school because he was being teased. Now he tell me what scriptures the pastor is preaching on because we come different times. And the other young man he’s 15 and every Sunday he asks me my name and he wants you to show him the scriptures but he’s such a joy to be around. And I know he’s going to do great things. And I want to make a difference in his life because I know with prayer and love he can also come through.. So I hope I encouraged somebody that it’s difficult but we can make it one day at a time.

REPLY

Yesterday I got my medical records from the Mayo Clinic it said I had limbic encephalitis. autoimmune encephalitles encephalopathy , seizures, partial seizures, and non epileptic seizures. I would say either I am confused or the doctors. I went to a neurologist there who has no clue of encephalitis because she doesn’t specialize in that area. I wanted to go to the one that did but sometimes when you are assigned a doctor in a area of medicine you can’t change to another in the same field. Which I will never understand but it’s because the doctors don’t want to admit their colleagues is wrong. It’s all about the doctors you and not your health. But anyway how can anyone have so many diagnoses and you are falling out conscious and sometimes unconscious. Even at the Mayo Clinic when I had my EEG they said I was Jenkins and having a nonlinear epileptic seizures and I don’t know what I was saying or the patient and fadoing until l looked at my records. I did my research and all the symptoms of autoimmune encephalitis but no one can figure it out because everything comes back normal even the EEG. And they said this can happen just get the information from patient and their families or caregiver. I should have went to medical school. So has anyone have a problem like this before? Because falling out, being conscious or unconscious and hands shaking doesn’t add up to me as being depressed. It saying something is wrong and you don’t know what.

REPLY

Hi @techi,

I moved your discussion and combined it with this existing discussion on encephalitis. You may notice that I also changed the title so that it better reflects your questions. I did this as thought it would be beneficial for you to be introduced other members who have discussed similar concerns.
If you are replying by email, I suggest clicking on VIEW & REPLY and continue to post your questions and suggestions within this discussion. I'm confident that others will join in with their thoughts as well.

I found a very recent research article, which I'd sincerely encourage you to read: "Autoimmune Encephalitis: Pathophysiology and Imaging Review of an Overlooked Diagnosis" http://www.ajnr.org/content/ajnr/early/2017/02/09/ajnr.A5086.full.pdf
The article has a lot of complex medical and scientific words, which a doctor would probably understand, but the reason I suggested it is it basically states and agrees with the frustrations you've been are experiencing! I've copied a bit from the concluding paragraph for your convenience:

"Due to its diverse clinical features, which can mimic a variety of other pathologic processes, autoimmune encephalitis presents a diagnostic challenge to clinicians. While there is no single diagnostic feature that can make this diagnosis in isolation, recognizing a certain constellation of findings during the work-up of complex and atypical cases of new-onset altered mental status is crucial to confirm the diagnosis with serologic testing and initiate treatment in a timely fashion."

I'd love to hear your thoughts and comments about this.

REPLY

In the past women were not treated correctly. I had terrible periods in high school. My mother took me to doctor who told her it was in my head. Then later my mom became I'll. She was taken to hospital where I was told I needed to get my mother to a therapist. Within hours she was in surgery and nearly died.

REPLY
@kanaazpereira

Hi @techi,

I moved your discussion and combined it with this existing discussion on encephalitis. You may notice that I also changed the title so that it better reflects your questions. I did this as thought it would be beneficial for you to be introduced other members who have discussed similar concerns.
If you are replying by email, I suggest clicking on VIEW & REPLY and continue to post your questions and suggestions within this discussion. I'm confident that others will join in with their thoughts as well.

I found a very recent research article, which I'd sincerely encourage you to read: "Autoimmune Encephalitis: Pathophysiology and Imaging Review of an Overlooked Diagnosis" http://www.ajnr.org/content/ajnr/early/2017/02/09/ajnr.A5086.full.pdf
The article has a lot of complex medical and scientific words, which a doctor would probably understand, but the reason I suggested it is it basically states and agrees with the frustrations you've been are experiencing! I've copied a bit from the concluding paragraph for your convenience:

"Due to its diverse clinical features, which can mimic a variety of other pathologic processes, autoimmune encephalitis presents a diagnostic challenge to clinicians. While there is no single diagnostic feature that can make this diagnosis in isolation, recognizing a certain constellation of findings during the work-up of complex and atypical cases of new-onset altered mental status is crucial to confirm the diagnosis with serologic testing and initiate treatment in a timely fashion."

I'd love to hear your thoughts and comments about this.

Jump to this post

@kanaazpereira l looked at the site it was very interesting. I knew it was autoimmune encephalitis and then it was autoimmune encephalopathy but when l went to the Mayo Clinic the neurologist put limbic encephalitis but l didn't understand that. Then when l saw the hepatologist is knew exactly my symptoms. And he put autoimmune encephalopathy residual. Then when l came to my hepatologist at home it was HE which l know is hepatic encephalopathy. And l know,l have liver disease. So it was a little confusing and l know right now nothing is active but its dormant in your body. And my previous gastroenterologist told me l had the liver disease because of previous medications which l found out on had been recalled and l was still getting it up on to Nov last year after asking the doctor and pharmacist about the medicine being recalled. And l have been taking this medicine for years. And they have been having problems with this medicine for years. So l just wanted to know after been diagnosed 21yrs ago with viral encephalitis how it could change. But everything is well and my doctor appointments are longer and fewer. And now l have to change my eating habits and exercise.

REPLY
Please login or register to post a reply.