Thank you so much for sharing your story. I am just now starting my journey with this. I am having similar, frequent seizures among other symptoms. I'm experiencing a lot of push back from doctors, just like you did... "Too rare, you would be in a coma," and they don't want to do any tests or treatments. I really appreciate you all at HESA at this phase in my life :)

Thank you . H E warrior also here . Thank you

Thank you Maddy ;-)

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 ?

Oh by the way my name is bernadette and its my husbands email address.

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.

@garyking5265

8 ай бұрын

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