HESA, Hashimoto's Encephalopathy/SREAT & Seronegative Autoimmune Encephalitis Alliance, is a 501(c)(3) non-profit organization established to spread awareness and increase understanding of Hashimoto’s Encephalopathy and Seronegative Autoimmune Encephalitis while supporting those affected by HE/SREAT and SAE. Information about the alliance is available at hesaonline.info
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This was my teacher
being a zebra can be so heartbreaking
This is all too familiar. I have not been diagnosed but have had all these symptoms with autoimmunity. I have found much help with a change in my diet. I find relief with no gluten or dairy. Very low sugar as well. I have no idea if that would help others but if it’s autoimmune then an autoimmune diet can make a difference for some.
Thank you for sharing your story.
We need this doctor’s HELP😭😭😭 please please 🙏
I just the read the sorry of April too my son was diagnosed with esquizofrenia, he’s 25 years old now, he was diagnosed when he was 20 years old, I need this doctor help please where can I find this doctor😭😭😭
16years ago when I was 30 I was diagnosed with HE and thought I was the only one to suffer that way. I was relieved to find out after few years that there are also others in other parts of the world diagnosed with HE but at the same time it made me and still makes me really sad. With HE I realised who my real friends are, some I blocked already. Not easy to be diagnosed at very young age must have been really difficult for you and here you are stronger than before and never giving up!! I am proud of you!!People cannot understand what they cannot see. I can relate to what you have been through. That horrible pain and migraines and all the other horrific symptoms and not being able to have the lights on. You are a survivor we all are! We won’t let it win :) Stay strong you are strong ❤
Odd how it effects each of us differently. My HE was always mental and never caused pain. I suffered from dementia and hallucinations and loss of muscle control. The high doses of steroids helped so much at first, but after about 6 months my body began to reject it. My neurologist then started me on IVIg and that stabilized me sort of. I tremor quite a bit and my short term memory is awful, but at least I have the ability to function somewhat of a normal life. I’ve been doing IVIg for about 8 months now and it seems like lately I have been going backwards a bit. My memory is getting worse and my tremors are getting worse also. Very discouraging at times. Hearing you talk about it helps. It reminds me how far I have come in a year and a half. So glad I found your KZread page. Thank you.
I have constantly read about medicine, pharmacology, biology to help myself. I have become desensitized to a lot because of my constant struggle with severe mental and physical symptoms after covid. Even if no other part of the story elicited a reaction it is beyond absurd and a wave of anger and disbelief washed over me as Karen described the brain bleeds and midline shift. I am 21, me and my family have assertively, politely, and correctly advocated with all the correct information constantly chasing answers and the fact that this can happen to anyone is beyond infuriating. I have been looking at a prospective diagnosis of autoimmune encephalitis for a while now, and am currently lost in directions to go as it is not typical autoimmune thyroiditis or autoimmune encephalitis and has not been showing on tests. This can and does happen to anyone of any age, creed, shape, size, anything. This is disturbing.
#encephalitis #hashimotosencephalopathy #autoimmuneencephalitis
#encephalitis #hashimotosencephalopathy #autoimmuneencephalitis
I have autoimmune encephalitis and sle...it is really bad and ruined all of my brain and organ....i want to die but i cannot commit suicide...
I have autoimmune encephalitis. It is NOT fun
What's so funny?
So encouraging to know that we will get better in time .i have trouble reading,i read my bible too but i cant tell you what i have read , have done that reading from back of the book to the front and the doctor said that it was really strange and he asked me why i did that , and i said i have no idea and he just said very strange, so the doctor has no idea either 😂 i also cant follow tv programs , ones i have watched all my life like the little house on the prairie, i have watched them a hundred times but still cant remember what happened and what is going to happen when it comes to the same episode. From Bernie in the uk
Im so greatful for you both because i thought i was loosing my mind and felt so alone but i know im not alone and i know i am poorly and do have HE and its not all in my mind like some doctors think .thank you for sharing ❤️
I also had to ask the nurse several times to repeat what sandwiches they had for tea and other things but the doctors think its just all psychological and i have to try harder and stop buzzing for the nurse because i can do things for myself, but at times i really couldn't, this just really made me upset 😢
Hi ive been having stroke like episodes in hospital it was awful and could not feed myself, could not talk , dripping out of my mouth , i made noises and i couldn't remember either short memory, i couldnt poor a jug of water and kept missing my cup and pouring water everywhere and couldn't think and had terrible terromors and couldn't move my legs and arms on my right side and numb etc , some nurses were nit very nice , they refused to help me to feed myself and get me to the toilet and shower room , i couldn't even was my own hair and shower myself and get dressed, i still cant without help .
Oh by the way my name is bernadette and its my husbands email address.
I'm so disappointed with my doctor, I went into hospital for treatment for Hashimodos Encephalopathy for 5 days , they couldn't get the IV in so they gave me tablet form of a brain disease medication the doctor said. But the sister nurse said I was on steroids which really confused me , what made things worse was I have very bad short term memory. I was so poorly in hospital but because he thought the treatment wasn't working as fast as he wanted it to , so he decided that I might not have HE , which I clearly did have all the main symptoms of HE and I had raised antibodies in the blood test and raised white blood cells in my spinal fluid when he did a lumber puncture. The professor then started to wean me off the medication for 10 days and on about the 3rd I did notice a improvement in my symptoms but I felt like the doctors and nurses were nit listening to me . And some nurses were very insensitive and would refuse to help me when I did need help , because some days I couldn't feed myself because I was having stroke like symptoms, I couldn't get out of bed , really bad muscle contractions and tremors that bad I couldn't hold a cup or feed myself and was dribbling out of the corner of my mouth and could not walk or talk properly either its was so awful and this was happening after they took the medication from me . At times I couldn't get to the toilet and shower myself and some nurses told me to stop buzzing the the nurses because you can do it yourself and I had very bad short term memory and sleep problems, the nurses said it's psychological 😢 , I was in hospital for 2 weeks and I had a chest x Ray and they told me I had a infection on my left lung and fluid, they discharged me and I was coughing up brown stuff up and could hardly breath, I went to my GP and they gave me antibiotics for 7 days but still poorly now and they going to leave for 3 weeks till they send me for another X Ray . I always say the wrong word and cannot think of the words to describe things and I don't remember what I did minutes ago or hours ago and days ago , my mind goes completely blank in mind sentences all the time . I don't know what day it is everyday and I don't know what time it is any time of the day . , I can't remember what I watched on TV even though I watched it several times or if I read a book I can't remember what I have read, even though I read it over and over .I can't stand for for very long and can't walk far, I now have a mobility scooter .I can't organise a routine like I used to before I had HE , I can't multi task, only can do a little task at a time but need help getting showered and to wash my hair and get dressed. Can't cook a meal etc . My amazing husband left work to look after me . 😢 so we on universal credit benefit and they are on at me to go back to work, I can't look after myself properly never mind go back to work. I can't hardly get up and downstairs and the professor said he thinks it's psychological I'm so upset, he said he wants me to have another lumbar puncture to see if the medication has worked, he didn't even offer me a different treatment he said there isn't anything else he can use , can anyone help me ?
I had Autoimmune Encephalitis when I was 13 that induced a Coma in 2001. These days I have a lot of neurological symptoms, including a sensitivity to light & sound that is ruining my life. Expression. MRI and Autoantibody tests come up normal. No psychiatric treatments work. Prednisone did nothing. So I think I’m supposed to wander off a bridge if I want to finally put an end to this. One noticeable thing about my Immune System that changed since before my AE was that I haven’t been sick with the Flu or Covid or anything since then. So something about my immunity certainly changed since my AE Coma.
It would be helpful to start with symptoms and go through the progression of symptoms instead of straight to the how/when of diagnosis and treatment.
I also have really bad tremors and jerking movements, memory problems, can't walk or lift my legs up , have trouble washing my hair and getting in and out of the shower, struggling on stairs , wet myself regularly, headaches, stroke like symptoms, troubles eating and talking etc the list is so long , I can't sleep, terrible nightmares but now I know I'm not alone in this and I'm going into hospital for a week soon for treatment on a drip
I am bernadette King, I live in the UK, I came across your video, thank you so much both of you , I have been diagnosed with Hashimodos Encephalopathy last week. I can relate to your symptoms and I felt so alone, I too was trying to pray but got so distracted and could not focus and forgot what I had read in my bible, I started reading the chapter from the end to the start and not really understanding why I am doing it .your video has helped me so much because my symptoms that I had years ago are starting to make sense now , I too had stroke like symptoms on 3 separate occasions and went to the hospital, the doctors did tests and said that I did not have a stroke and just sent me home . I am feeling a loss of the person that I used to be , I keep going back to my childhood maybe too much .my husband was listening to your video and he said the things you shared he saw in me . This has helped me , knowing others are going through this as well and I don't feel alone thank you so much for what you are doing and for sharing this video God bless you both Bernie and Gary from the UK
Forgot to put this is on my husbands email and that I'm 52 years old and I'm here in the UK
I have just been diagnosed with HE Hashimodos Encephalopathy, I was misdiagnosed with fibromyalgia , I was referred to neurology clinic at hospital and had loads of tests and was diagnosed in about 3 months and I am going into hospital for a week for treatment by a drip , I deteriorated fast where I couldn't walk or even wash my own hair , so many really bad symptoms, I have really bad tremors and seizures and like stroke symptoms, wetting myself and not being able to think or remember things , breathing problems and terrible headaches wuth blured vision . It's been a terrible experience and very frightening at times
Proud of you Kevin 🙏🤗🤩
I’m going through the same thing with my daughter. I just emailed her doctor Tewa multidisciplinary team and he basically told me that my daughters condition would improve if not for family interference.
This is SO awesome! I enjoyed listening to Dr. Markx presentation! As a psychotherapist, I feel that it is vital for therapist to be trained to conduct more thorough assessments from the outset to try to identify individuals who are experiencing some of the physical symptoms mentioned! I pray that someone develops a model to educate mental health professionals from the bottom up to help improve the entire mental health system!
Thank you. Yes it is hard. Our daughter was not diagnosed and treated timely due to covid cases and lockdowns and healthcare shortages in a state that mandated shots to work in healthcare, causing even more to flee the state and create even more short staffing
These elevated auto ABs do not affect the thyroid at all? My TPO was in the thousands and Tg AB elevated too. But it was years of Synthroid that got them decreased. TPO ab below 20 & Tg ab 9, though still abnormal but much lower. Does the encephalitis always cause seizures?
Very descriptive and informative with the appropriate questions asked. Thanks to both of you. Awareness is so important.
Are the hashimoto antibodies found in the blood or just in the spinal fluid or both? Guess one has to google to find out. Be nice if more information is given and more detailed description of symptoms. IVIG is very expensive, so to get it on a weekly basis one probably needs a really good insurance plan or obtain some outside help to offset costs.
Unfortunately she's not very descriptive about her symptoms and what to look out for. Seizures and insomnia, but there has to be more not discussed: what were her neurologic symptoms, her psychiatric symptoms, etc. . Just a lot of LOL LOL. LOL.
Hi people with HE can't remember everything and find it very difficult to find the right words to describe what you want to say , I know I do as I have HE , your brain is not working as it was and it is working much slower and concentration is very poor etc , it take longer to process things and to answer as well, it is taking me ages to think and type this message right now , it's so mentally exhausting to think as well as the emotional side as well as physical problems, I know my memory is so poor short term it can be very distressing, this young lady on here is on medication but it doesn't take all the symptoms away completely
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When I worked in a state institution in nj a team from Harvard came down. They also stressed the necessity of mds and phds to work together. Outstanding work how are the stats now?
My son had pineal gland brain tumor when it was removed it was almost 5 cm. He has wired form of chronic psychosis where he has catatonia, bizarre behavior agitation and aggression, emotional degradation, but no voices or delusions. How to connect with DR. Markx? Can he take my son as patient?
What is Dr. Sander Markx, MD's office address? Dr. Markx's office is located at 25 Central Park W Apt 1L, New York, NY 10023.
New York State Psychiatric Institute 1051 Riverside Dr New York, NY 10032
My son is 23 years old. We have gone through some much from the age of 17 years old. It is so sad that he hasn't had a chance at life. WE NEED THIS DOCTOR'S HELP.
What is Dr. Sander Markx, MD's office address? Dr. Markx's office is located at 25 Central Park W Apt 1L, New York, NY 10023.
New York State Psychiatric Institute 1051 Riverside Dr New York, NY 10032
Check the vaccination history of April and your other patients with autoimmune encephalitis induced psychiatric symptoms (and general autoimmunity and temporal brain damage). The medical literature documents a litany of such cases following childhood and routine vaccination.
any examples of such literature you could direct me to? or could you mention cases you know where psychiatric disorders have been linked to specific vaccines?
I just read the story about April. You’re amazing, Sir. ❤
Thank you . Are you treating overseas patients. My daughter regressed and this video helped me understand AE.
my heart goes out to you and your daughter
I have this. I hope his daughter is o.k. now
The neurological symptoms got significantly worse after many years of a stomach illness, that caused inflammation of the entire gastric system along with biopsy showing swollen lymph nodes, Constanct cracked and splitting lips and fever blisters, also developed low thyroid function, had muscle pain and bone pain , went to er and had a steroid shot for headache, after sleeping had trouble walking and severe manic episode, please help
Tonya Padgett 2 minutes ago I need help I am having most of these symptoms for around 3 1/2 years, MRI showed frontal brain lesions , I’ve been to many Psychiatric wards medicine hasn’t worked, blurred vision, confusion, disorientation, unusual behavior, unusual risky sexual patterns, tingling and neuropathy, head and ear pressure, insomnia, muscle twitching , tremors , appetite changes and weight changes, headaches , severe anxiety, depression, startle easily, ocd, and I stay in bed because holding a conversation is extremely hard to do, extremely hard to drive , shop, sensitivity to light , tinnitus, Please please I need help! These symptoms make it almost impossible to leave home, and go through more unNecessary tests, can I just go somewhere and get the proper tests! Please help me someone
And some double vision occasionally
I need help I am having most of these symptoms for around 3 1/2 years, MRI showed frontal brain lesions , I’ve been to many Psychiatric wards medicine hasn’t worked, blurred vision, confusion, disorientation, unusual behavior, unusual risky sexual patterns, tingling and neuropathy, head and ear pressure, insomnia, muscle twitching , tremors , appetite changes and weight changes, headaches , severe anxiety, depression, startle easily, ocd, and I stay in bed because holding a conversation is extremely hard to do, extremely hard to drive , shop, sensitivity to light , tinnitus, Please please I need help! These symptoms make it almost impossible to leave home, and go through more unNecessary tests, can I just go somewhere and get the proper tests! Please help me someone
Get your hormones checked.. I had all of those symptoms due to low testosterone.. if you are a women it could be low estrogen low progesterone and low testosterone. Do your research . Hope you look into this you have nothing to lose.
Wait how did they know she had auto immune encephalitis without the antibody ?
Living with hypothyroidism was so hard and painful, but thanks to doctor okouromi treatment using herb’s to get rid of thyroid problems…🌻🌼🌼🌷🌷🌷🌷🌸🌹🌹🌼🌸🌸
Thanks for posting this. I have autoimmune encephalitis and it is no fun