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Lisa
@techi

Posts: 303
Joined: Jun 18, 2017

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

Posted by @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.

REPLY

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

@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

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John thank you for that website. I read that story and its so interesting. I have a neurologist at the mayo clinic and i feel shes knowledgeable but i know that autoimmune encephalitis is not her area. I know it only Dr Britton because i was reading is bio. I have had so many neurologist and all of them i have disgreed with that why i had to have a second opinion and all the symptoms that are described as symptoms i have had and still dealing with. And i know these doctors here know they misdiagnosed me because they are on pins and needles and the hospital i was going to my insurance is dropping them . Well that doesn’t sound good and 600 doctors are going to lose my insurance carrier which is there main revenue. So i know deep down inside thats what i have but the neurologist at the mayo clinic said i had it previously but it not currently showing and Dr Britton said sometimes all you test may come up normal but you still have it. Im truly blessed to be alive and i just wish he could read the reports without offending anyone. Ive been goiing through this a long time and when you finally see someone who knows what to look for gives you so much relief that it wasn’t in your mind. And the neurologist im seeing said you might have to except it. So l am suppose to have my PET done and l have already seen 2 psychiatrist and when l come back they want me to see another. And they want to test me for dementia because it runs in the family, which Dr Britton said sometimes they will think you have that also. And l just can’t keep coming to Minnesota. So l really don’t know what to do. In just 3 months l have had more positive results since 20yrs and in 3 days more understanding in autoimmune encephalitis that its a disease not a mental condition something l always felt inside. Thanks John

Hello @techi, I’m so sorry you have to go through such a tough situation. I’m hoping they come up with some answers for you. Please stay in touch and keep us updated. Keeping you in my throughts and prayers.

God Bless…

John

I have been told I have autoimmune lambic encephalitis. But I’m not exhibiting common symptoms. The level of antibodies is high but not high enough I guess. I’m happy but unsure if I should pursue treatment.

@soccerchick

I have been told I have autoimmune lambic encephalitis. But I’m not exhibiting common symptoms. The level of antibodies is high but not high enough I guess. I’m happy but unsure if I should pursue treatment.

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That is limbic

@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

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Very interesting article. Thank you.

@soccerchick

I have been told I have autoimmune lambic encephalitis. But I’m not exhibiting common symptoms. The level of antibodies is high but not high enough I guess. I’m happy but unsure if I should pursue treatment.

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Hello @soccerchick, I think it’s difficult when you are looking at rare type health problems like yours and trying to decide what to do. Are you able to get a second opinion? I did find a little information that may be helpful.

Paraneoplastic syndromes of the nervous system – Mayo Clinic website discusses symptomes and possible treatments:
http://www.mayoclinic.org/diseases-conditions/paraneoplastic-syndromes/home/ovc-20315084

Oxford Academic – Brain – A Journal of Neurology articles:

“Paraneoplastic limbic encephalitis: neurological symptoms, immunological findings and tumour association in 50 patients”
https://academic.oup.com/brain/article/123/7/1481/380251#

“Treatment-responsive limbic encephalitis identified by neuropil antibodies: MRI and PET correlates”
https://academic.oup.com/brain/article/128/8/1764/481343

Limbic Encephalitis and Variants: Classification, Diagnosis and Treatment by Erdem Tu¨zu¨n, MD, and Josep Dalmau, MD, PhD:
https://www.researchgate.net/profile/Erdem_Tuezuen/publication/5991390_Limbic_Encephalitis_and_Variants_Classification_Diagnosis_and_Treatment/links/0a85e53bfa4dab60af000000.pdf

John

Yesterday l was telling my daughter about what the internal med doctor at the mayo clinic told me, she said you were suppose to have an ultrasound in Oct 2015 to see if what you were going through had to do with your liver or autoimmune disease. You know everything is coming to the surface and its all in my favor. And now my insurance wants me to send them copies of my recent test. I showed my husband and l told him l never heard of that before and if they want it so bad they can get it. I can’t wait until next week when l see my general practice doctor l wonder what he will ask for. When l went to see his PA last week we were updating my allergies again and she told me it goes directly in the hospital system l told her it doesn’t so anyway l was put on a new high blood pressure med in 2015, they prescribed me one with a water pill. I made it clear to them l can’t take it with a water pill and its still on my hospital record. Even the pharmacy know l can’t take it. I don’t know if this is something new but its very dangerous so you always have to be on top of things. Thank God my memory is getting better. I am working on it everyday and l know the best is yet to come.

@soccerchick

I have been told I have autoimmune lambic encephalitis. But I’m not exhibiting common symptoms. The level of antibodies is high but not high enough I guess. I’m happy but unsure if I should pursue treatment.

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I am so excited. First of all you have been a saint. I’ll never forget your kindness or your name for that matter. This information you have sent is excellent and helps me tremendously. I’m not very good with computers, but you have nailed it on the head and put this into perspective for me. Thank you, thank you, thank you. I told my sister about all the articles I read from the three links that you sent. Very interesting stuff. I cannot believe all of this research that is out there.

@soccerchick

I have been told I have autoimmune lambic encephalitis. But I’m not exhibiting common symptoms. The level of antibodies is high but not high enough I guess. I’m happy but unsure if I should pursue treatment.

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I’m am definately going for a second opinion. My neurologist at mayo retired. I liked her. Her specialty was ms but she gave me good advice and really cared. I do feel like I have to start over but at least I have a lot of testing already under my belt that a can share with a new neurologist . My sense of direction is getting worse and I feel like I have to do something now rather than later.

@soccerchick

I have been told I have autoimmune lambic encephalitis. But I’m not exhibiting common symptoms. The level of antibodies is high but not high enough I guess. I’m happy but unsure if I should pursue treatment.

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Hi @soccerchick, I’m really glad the information was helpful. If you need to do a search for clinical research and articles a good place to do the search is using Google Scholar – https://scholar.google.com/. You can type in a search term, words or a phrase and it will give you a list of links. Then when you see the results you can use the year links at the left side to organize the search results.

Keep learning as much as you can about your condition. This will help you ask better questions of your doctors and help them help you. Good luck on your journey. Please keep us updated if you can.

John

@soccerchick

I have been told I have autoimmune lambic encephalitis. But I’m not exhibiting common symptoms. The level of antibodies is high but not high enough I guess. I’m happy but unsure if I should pursue treatment.

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I appreciate this too and having MULTIPLE Autoimmune diseases and having a source of communication with this community is priceless for getting info, support and help!

@soccerchick

I have been told I have autoimmune lambic encephalitis. But I’m not exhibiting common symptoms. The level of antibodies is high but not high enough I guess. I’m happy but unsure if I should pursue treatment.

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Hello @soccerchick,

I’d like to add my welcome to @johnbishop‘s, and also tell you how glad we are to have you join us.

I found these past discussions on limbic encephalitis in the Brain & Nervous system group on Connect:
– OMG! I feel your pain….we are going through this same thing with: https://connect.mayoclinic.org/discussion/omg-i-feel-your-pain-we-are-going-through-this-same-thing-with/
– Encephalitis of Unknown Origin – treatment resistant: https://connect.mayoclinic.org/discussion/encephalitis-of-unknown-origin-treatment-resistant/

In the meantime, I’m tagging @mamapearl @jemarsh @mlhenderson @mjenkins00, and sincerely hope they will return to share their insights.

I would also encourage you to view this story:
A Mother’s Frightening Fight Against Autoimmune Encephalitis: https://connect.mayoclinic.org/2016/11/15/a-mothers-frightening-fight-against-autoimmune-encephalitis/

Today was reading an article from the lancet neurology about autoimmune encephalitis and misdiagnoses. It was very interesting about how you may have mental issues but it neurology problems and also that so many test may come up normal but if you still have issues or doctors don’t want dig further its easy to say its a mental issue. It reminded me when l was in the hospital and they took me off the antidepressant because l was having problems with double vision, headaches, falling and unconsciousness they put me on another antidepressant and l wasn’t getting better they wanted to put me in a nursing home. Thank God for family. And they were even talking about the PET, it can come back normal also and how it rules out other illness but it doesn’t tell you that you have autoimmune encephalitis. That the doctor would have to be trained to know how to look for it. And if it rules out other things theirs another PET your doctor can order but usually neurologist don’t know about this. So my neurologist said something at first l thought was a little unusual. You might have to deal with it. And l told her recently l was having headaches for 3 days and l was also nauseated and stayed in the bed. And she said that l had autoimmune disease before so that can be a residual of the first time. And l have been putting ice on my head because of the pain. And l having my test to rule out fmd. They also talked about people who have headaches and the doctors will look for fmd but its not seen. I always thank God for showing me where to go for information and when l tell the doctors what l find they don’t like it. So l guess l will have to show the neurologist at the mayo clinic because she was asking me why l didn’t want antidepressants. And when l saw not 1 but 2 psychiatrist there they both didn’t see anything wrong. So now they want me to see a 3rd one and she can find something. But when l show them what l have been reading l might be getting my doctorate degree and didn’t even have to go to medical school. Because when l read a nurse and her husband who was misdiagnosed l was surprised but l guess l shouldn’t.

How do you diagnose autoimmune encephalitis? That is, what test proves that u have it? I took a blood test and the

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