Hi there, I am from austria, 32 years old, and I got a neurological disease in june 2024, I was 16 days in hospital.
It start with cognitive disfunctions. On next day with symptomatic like stroke. On my right side, it starts down my feet and goes up to my head. When it reaches the head I cant speak clear and I was confused.
First in hospital they told me it was migraine. But I never had this before. I was really scared.
Few days later this attack came back. I took migraine pill, like the doctor recommended to me. But it gets worse. I cant speak, my body cramps, I cant see good anymore, I cant move, it was horrible. After two hours it was over, but I was really confused and angry. My boyfriend was with me and took care of me, <3 he is the best
The third and last attack was two days later. I took another migraine pill from another pharmabrand. And it was so hard, I end up in hospital then. Bcz I had fiber and I was really confused. Cant speak and see... And it feels like I am locked in my body and I only want this to stop... Horrible...
I got prednisolon and of course antibiotics but they couldnt find the cause of this inflammation in my brain. I had a pleozytose and once a EEG control with some struggles on left temporal brain side.
I go home with diagnose "PMP(or handl syndrome)
and my neurological extern doctor said she thinks it can be autoimmune encephalitis.
We will do a PET Scan soon, maybe they will find an inflammation which could be the cause of this. I hope no, but I want to know what it was, if it can come back...
Fact is, I quit my job because I have to rest. I am really fast exhausted... It gets better from time to time but when I do more exhausting things, I feel this crawling under my skin again. But only on the right side again, like when I had the attacks. And I get really really tired...
I do not take prednisolon since end of july.
I wanted to ask if somebody also feels this crawling under the skin? Or somebody here with PMP(handl syndrome) ?
I am happy to be here and can share my experience with other people with brain disease. I do not feel alone
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Juppiter
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Hey, sorry you're going through this. Have you had a lumbar puncture? To test cerebrospinal fluid for neuronal autoantibodies. That's the way to confirm antibody-positive autoimmune encephalitis.
Hey katerina, yes I had two but they could not find any. My neurological doctor said she had once a patient and years later they find the autoantibodys 🤔 but also she said I can be happy that my body reacts to prednisolon and it can be that this disease never come back. So yeah, fingers crossed
Yes I have to do PET Scan, this is like the better MRT to check out if there are any tumors maybe. And gynological test.
I had autosonic test last time to check my spleen. This looks good and show that my immune system works normal so...
It is really interesting that the brain can have a shut down like this.
I read the book "heal your brain" from anthony william and he describe a neurologicsl disease with this story:
"imagine you go for a walk in the mountains alone. You pack you backpack with a map, compass, water, snack, apple. Then near the top of mountain you feel dizzy and lost the way, then you grab the backpack for map and water but you see there is nothing, no help and nobody there."
And yes, so it is, the brain is not explored enough to get answers...
But one fact is true in this story. I had a lot of stress, and my body was weak in this time in the month of disease. So it is really important to avoid stress this is what I can advise to everyone.
Sorry to hear you are having such a rough time. Diagnosis of non-viral problems is pretty difficult. Mine turned out to be auto immune Enc. so there was no infection to be found. I'm on immune suppressants, plus anti-seizure, plus others.
I get infections easily so life can be hard, I get in hospital with sepsis symptoms and go on antibiotic drips for a few days. I'm in my 5th year and have recovered enormously. I can walk and talk and handle a fork. Mental and physical exercise is key, plus rest and sleep and a good diet. The internet is great for following things and reading.
I reckon I'm almost back to normal - but who knows? I go walking, and have returned to my sailing club (tentatively). I avoid crowds, noise, bright light, and due to a spinal injury have to take morphine and pain relief. I have to lie flat till the pain goes. With help you should make a good recovery. Your boyfriend sounds like a star. Love really shows at times like these. Bless the both of you. Best wishes G2
Hi Gandalf2, I am really sorry for that but I am really grateful that you are on a good way! Amazing. Why you had a spinal injury?Yes I feel it to that loud noises and bright light is not good for me...
With immunsuppressiva you mean Cortison?
How did the Autoimmune enc. start? How you felt in this time? You felt that is something different?
Yeah my boy is a star 🌟💙 I love him, thank u for wishes. Also all the best for you and your recovery!
Hi Juppiter, I'm on mycophenalate for immune suppressant. This should stop my immune system attacking my brain. I take predisolone to help fight infection.... They took four lumbar puncture samples before coming to a diagnosis. I don't get crawling under my skin or numbness or stroke like symptoms. My brain is recovering well with exercise, diet and staying interested in things. Reading, parlour games, crosswords, internet etc. Spinal injury was due to lifting heavy (backpacking with heavy rucsac) things along with osteoporosis. I am losing height as my legs and spine are shorter. My bicycles are now too big! I have two Brompton folding bikes so may use those. Perhaps buy a Tesla as I can't safely drive. I still have no memory of important life events and very poor short-term memory. Not too bad. One can cope with an amazing amount of stress and setbacks. I too get incredibly tired for no reason. This is called fatigue, and all I can do is rest and sleep. Sleep is very good for brain repair. I am retired, doing my old teaching job would be impossible. I get a pension and some disability money. My amazing wife has risen to the challenge. At the moment we are in a caravan in Filey on the Yorkshire coast - wet and cloudy! Must bail out now as I'm tired.
Hi Jupiter,I am so sorry to hear that. My heart goes out to you.
It's not impossible that it could be Autoîmmune Encephalitis, because I'm aware that it can look like a stroke or be misdiagnosed with a stroke, and yes it can sometimes cause electrical brain activity - spike that is usually down one side of the body that's what I'm well aware of. I'm far ́ore knowledge now about all different types of encephalitis their after effects at different ages and how this affects the way the brain works after it's injured
I also have so much more knowledge now than ever before with regards to how it worked before encephalitis enters the brain.
I agree with your neurologist. I wish you the best of luck with your P.E.T scan.
I hope this helps you.
Please keep all of us posted how you get on and the results . You are in my thoughts.
Hi Paula, thank you so much for your comments. I really appreciate. You have Autoimmune Enc. or why you have so much knowledge now? Can you share your knowledge with me please? Do you think that stress can affect this?Thank u so much I will share my results here, but first I have to wait a long time for a PET Scan Date.
I had a different type of encephalitis as a 1 year old called Herpes Simplex Encephalitis.
One doesn't need to have had the same type of encephalitis to understand other types, but I have learnt a lot from Encephalitis International over the last almost 5 years. I'm not currently involved, but in the future I hope to be involved again. That's all I'm saying because it's a bit personal.
Even so I still do my own encephalitis awareness/research just the same because it's a topic I'm very passionate about because I think we need a world without death from encephalitis and without disability for everyone regardless of their age/backgrounds etc.
So I still research the neuroscience myself and always will do. I like being of some help to as many people as possible globally affected by all types of encephalitis.
Stress doesn't help even at the best of times, but first I would like to see how you get on with your P.E.T scan.
Could you please let me know the results and how you get on. I wish you the best of luck with that. 🙏
I'm so sorry that you had a very frightening and experience , it's very worrying for you and for your family/friends.
I'm so so sorry that you have had to quit your job.💔
Everyone on here has had different types of encephalitis - an inflammation of the brain at different stages of life, resultibf in sifferent after effects, some similarities, and others have different after effects and that's ok, so you're not alone.
I'm well aware that autoimmune encephalitis can be misdiagnosed for a stroke because they have similar but different symptoms sometimes with electrical brain activity spikes/waves but not always. I think "maybe" you might have a type of autoimmune encephalitis like your neurologist said. There are so many different types of autoimmune encephalitis different antibodies that can cause encephalitis .
Best of luck with all your tests and keep me posted how you get on and what the results are.
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