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

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.

Lisa @techi, thank you for sharing your story. I am happy that you found some answers and are recovering. It is an inspiring story and the reason why it's really important to be a strong advocate for yourself and others who may not be aware of how important it is.

John

@techi, That is great! You and I and thousands of others forget that the Mayo clinics are just gatherings of humnan beings, and do make mistakes, and that we are our own best doctors when we dig out the information ourselves. Thanks again for telling us of your journey.

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.

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.

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.

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.

@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.

@kanaazpereira Hi l just wanted to know if you have heard this before, l was talking my dog to the vet and the vet told me she might have liver disease. When l looked this up l found out that dogs can have encephalopathy and some of the meds we take they take also. One of them was milk thistle and lactulose
That was so mind blowing to me, maybe l should give her my meds. But l also have been noticing l have been swelling all over. I know its not my eating. I called my general practice doctor because that what my hepatologist said and if its something that's hurting or my ammonia levels are high call him. So l emailed the doctor and no repose but he could be out of town. Usually l would get a reply from his PA or one of the other doctors. Sometimes they take alittle longer because l am not their patient which l understand because one of them l really want to transfer too
That's not what they do because if their partner fines something different they usually won't tell you. So l guess l will have to call my on call nurse until Monday. I just wanted to tell you about dogs with the same diagnoses.

Would love to hear your outcome when you finally get an answer you feel is correct.