Autoimmune encephalopathy anyone?

Posted by tanap1 @tanap1, Tue, Oct 22 5:39pm

Searching for a diagnosis!!! I am looking for others who may be having similar experiences as I am. I have been diagnosed with Hashimoto Thyroiditis for many many years now. I take levothyroxine, which seems to keep my thyroid in check. However, about 5 years ago I began having neurological symptoms; gait issues, off and on memory loss, concentration issues, tremors, seizure like episodes, stroke like symptoms, severe muscle cramping (dystonia?), word finding problems….the list goes on and on. These symptoms come and go, usually made worse by stress or being tired. All diagnostic tests I have had come back normal, eeg, emg, blood work including various antibody screenings, MRI's, cardio sonograms, EXCEPT for low but normal memory screening and very high TPO and TGab levels. I was given 1 5-day treatment of IV 1000 mg Solu-medrol which turned me into a brand new person!!! I felt great for several months but my symptoms are returning now. My current Neurologist has now referred me to a Neuro immunologist. This will be my 5th Neurologist in 5 years!! I am so nervous that I will be dismissed after I actually had something work for me. I have been dismissed by many many drs through this. All the things I have learned seem to point to Hashimoto Encephalopathy, HE, SREAT, AE….whatever you want to call it. BUT I have found many people in the medical field don't believe in this diagnosis! Any help, pointers, suggestions, or support out there? Is there anyone experiencing similar things?

@brie

Encephalitis…is this inflammation on the brain? What sort of medicine does one take for this?

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Hello, Peach here: My daughter came down with Post Chicken Pox Encephalitis at six years of age. She was reading and doing math at the time and lost it all when she fully woke up. Within a few months she was back to normal. She was asleep for almost a month. Now today at her age of 58 (and a registered nurse) she is doing very well. There was no vaccination for chicken pox at that time. I thank the medical profession and god for her full recovery. Some people think this was unlucky but I do not for she pulled out of this 100%.

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@tanap1 Your challenge in getting this diagnosis is certainly a reality for many who are afflicted with it. My mom passed away several years ago however, she spent a good 5 years struggling with symptoms (mood changes, impulsivity, gait changes, memory changes, etc.) that were chalked up to severe relapse of her depression. She was even hospitalized for this and put on 2 additional medications, one fore sleep – which was prescribed at the highest level. I remember thinking she was a zombie with all the meds. Fortunately, I worked with a brilliant neurologist who had experience with autoimmune encephalopathy and I was able to talk with him and explain that I did not think my mom's illness was her depression. Our family has a large autoimmune history and I was concerned that there was more to this than depression and I hated seeing her drugged especially if this was something more. He agreed to see her and began by ruling out other causes of the symptoms and weaning her off her medications. He did discover she had pernicious anemia and treated her for it. Some symptoms got better however, others remained. About 6 months after he became her provider, he shared that he had a theory that she may have autoimmune encephalopathy and to confirm it he would treat her with high dose IV steroids. We agreed to this and the treatment brought my mom back to her "normal" state. The neurologist did explain some people never relapse while others do. My mom did relapse and was treated on 2 additional occasions. Keep advocating for yourself! I hope the neuro-immunologist will help provide some answers and guidance on treatment for you. Best wishes to you!

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@tinalsc

@tanap1 Your challenge in getting this diagnosis is certainly a reality for many who are afflicted with it. My mom passed away several years ago however, she spent a good 5 years struggling with symptoms (mood changes, impulsivity, gait changes, memory changes, etc.) that were chalked up to severe relapse of her depression. She was even hospitalized for this and put on 2 additional medications, one fore sleep – which was prescribed at the highest level. I remember thinking she was a zombie with all the meds. Fortunately, I worked with a brilliant neurologist who had experience with autoimmune encephalopathy and I was able to talk with him and explain that I did not think my mom's illness was her depression. Our family has a large autoimmune history and I was concerned that there was more to this than depression and I hated seeing her drugged especially if this was something more. He agreed to see her and began by ruling out other causes of the symptoms and weaning her off her medications. He did discover she had pernicious anemia and treated her for it. Some symptoms got better however, others remained. About 6 months after he became her provider, he shared that he had a theory that she may have autoimmune encephalopathy and to confirm it he would treat her with high dose IV steroids. We agreed to this and the treatment brought my mom back to her "normal" state. The neurologist did explain some people never relapse while others do. My mom did relapse and was treated on 2 additional occasions. Keep advocating for yourself! I hope the neuro-immunologist will help provide some answers and guidance on treatment for you. Best wishes to you!

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@tinalsc Good morning and welcome to MayoClinicConnect. We are here as a community to share our health experiences, to seek information, and to provide support. I hope you’ll continue with Connect and share your mother’s experiences. . I’m so glad your found a neurologist-immunologist and were able to advocate for your mothers. How have you been doing these past two years?

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This past week l was admitted to the psych ward and l know it was because of my confusions. But the doctors here are missing everything. They said l have dementia but they didn't do a PET test and l had that done at the mayo clinic in 2017 and it was normal. And my memory has only gotten better. I remember going through a test and the doctor was so surprised of my memory he through the test paper in the air. In the room l was being tested in. I know my state is trying to say they found the treatment to AE and HE but they didn't only God has and he has guided me where to seek help at the Mayo clinic. And l could have went to another place but he guided me to Rochester Minnesota. And yes l have a good team here but that was only for my heart. But as far as AE and HE, Oklahoma is at the bottom for knowing how to treat this illness. I just so blessed l will be returning to the mayo clinic next month. But to be diagnosed with dementia and not having a PET is really just a guess and not for the guessing business. If you don't know it don't say it. And also put negative diagnoses on clients charts because it confuses everybody. But l was in the psych ward for 8 days giving God all the Praise. Singing and quoating scriptures and that use to be a problem but when Jesus is in your heart fear goes away. And everyone see what God is doing in your life. I am praying for everyone who is going through this because it not a party it's a struggle but Thank God he frees us of all FEAR. And we are more than a Conqueror.

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@techi

This past week l was admitted to the psych ward and l know it was because of my confusions. But the doctors here are missing everything. They said l have dementia but they didn't do a PET test and l had that done at the mayo clinic in 2017 and it was normal. And my memory has only gotten better. I remember going through a test and the doctor was so surprised of my memory he through the test paper in the air. In the room l was being tested in. I know my state is trying to say they found the treatment to AE and HE but they didn't only God has and he has guided me where to seek help at the Mayo clinic. And l could have went to another place but he guided me to Rochester Minnesota. And yes l have a good team here but that was only for my heart. But as far as AE and HE, Oklahoma is at the bottom for knowing how to treat this illness. I just so blessed l will be returning to the mayo clinic next month. But to be diagnosed with dementia and not having a PET is really just a guess and not for the guessing business. If you don't know it don't say it. And also put negative diagnoses on clients charts because it confuses everybody. But l was in the psych ward for 8 days giving God all the Praise. Singing and quoating scriptures and that use to be a problem but when Jesus is in your heart fear goes away. And everyone see what God is doing in your life. I am praying for everyone who is going through this because it not a party it's a struggle but Thank God he frees us of all FEAR. And we are more than a Conqueror.

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Hi @techi, I moved your message to this discussion about autoimmune encephalopathy (AE) where you were already connecting with other members. All the best with getting answers at your upcoming appointment.

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@tanpa1 l was also diagnosed with HE and AE. And where l live they don't know the symptoms. Since 1997 when l was diagnosed with viral encephalitis l have been put in a psych ward 5 times because of confusion. The first time l was put in l did want to commit suicide because l had 5 children my oldest just graduated from H.S. And we had just moved to a new house, l had a new job and l just purchased a new car. The first new car l had ever brought myself. And now l was faced with a brain injury. And so l than l began praying and l feared God more than man. And l knew if l wanted to go to heaven l better get it together..So l prayed the Lord would take that thinking away from me. And l never thought about suicide again. But the doctors don't understand that you will get confused, and your ammonia levels fluctuate. And it also could be dehydration, your diet and yes it can sometimes be stress. And l have had alot of stress that my family was putting on me because my sister has dementia. And her family isn't taking care of her. And her children wants my family to do the work while they spend her money. Then l had two deaths last year. My mother passed and my nephew. But l wasn't stressed about that because my mother out lived all our family members prior. She was 95yrs old. I miss her but l know if l live right l will see her again. And everything was taken away l.lost my job because of my disability which l now know thatcshiuld have happened. But l went back to school and got my associate's degree. And this year l am starting my business and l will be returning back to school. So living with a major illness is hard but it can also be a blessing. Because you see things differently. And you Thank God for every obstacle you go through and l pray that l can help someone else and have compassion for others. Because some people may have a different turnout. So l just pray for others. And l pray that all doctors will be able to learn the symptoms of this illness so everyone gets a chance to have a full recovery. And last Saturday l was just released again from the physic ward. And they doctor has mistaken my identity with another patient with the same name. And while l was in the physic ward l saw the other patient with my name. And she was angry, throwing things , cursing and l was singing Father Abraham and Joyful, Joyful and quoting scripture. So l would say l was healed and the hospital, doctors made a mistake. So l have to get this straighten out with my insurance, medical records and so forth. Now that's what l call stressful. I worked in a hospital for 9yrs so l know protocol. And l take lactulose and rifaximin. And l will be going to the mayo clinic in December because my rheumatologist told me that the doctors here are not trained to help me here. I have to go back to the mayo clinic for my AE. So l Thank God we still have doctors who care. And l had emergency heart ablation surgery. And l haven't had any falls for 6months. And l am walking faster than before. My husband tells me to slow down. Praying for you.

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Tanap1, are you aware that there is also a diagnosis of Hashimotos Encephalitis. Your symptoms of memory loss, fatigue, seizures, word aphasia, etc are all symptoms of encephalitis. I have Limbic Encephalitis and had your symptoms and when in the ER, they initially thought I had a stroke. IVIG also worked for a few months. I belong to a page on Facebook called International Autoimmune Encephalitis Society and they are AWESOME in helping people with questions and to let you know you’re not alone. They also have a website. One of they first things I would suggest would be to have your dr do an antibody test via spinal fluid and have that sent to a clinic i.e. Mayo that is qualified in antibody testing. That’s the only way they confirmed my diagnosis. There are a lot of forms of autoimmune encephalitis and each have their own list of meds that work, and symptoms. Don’t give up, you just need the Dr who won’t give up until he/she has a proper diagnosis.

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