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What type of encephalitis? Autoimmune, limbic, or encephalopathy?
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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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
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!
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3 ReactionsHello @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/
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1 ReactionToday 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.
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2 ReactionsHow 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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1 ReactionSorry. I am continuing my story and question. Like I was saying, I took a blood test and the potassium channel blockers were slightly high, but not high enough for a difinitive diagnosis in such where insurance will cover a treatment of ivig ( cleaning out the proteins out of blood thru plasma or something. I don't exhibit the common symptoms like seizures but I do have cognitive decline , executive disfunction, balancing on a treadmill hard at first but I get used to it and memory is ok but not great. I have bipolar 1 also. So that doesn't help. My reason for writing is that I want to treat this encephalitis because I'm worried my level in blood will get worse hense symptoms will get worse. I am happy but I am experiencing worsening of cognitive decline. I know if I don't use cpap it makes things worse. So, I use cpap for sleep apnea religiously. I've had three brain MRI s. And a spinal tap. But my tap they only tested for general diseases. I think I would have to get another tap but I am not ok with getting a second one.
Hello @soccerchick, here is some information from Mayo Clinic on how autoimmune encephalitis is diagnosed:
http://www.mayoclinic.org/diseases-conditions/encephalitis/diagnosis-treatment/diagnosis/dxc-20321043
John
Look online at the autoi.mune encephalitis alliance and also read the lancet. It will give you a lot of information
I meant to say the lancet neurology.
Thanks