r/Encephalitis

Feeling incredible defeated and upset. I always knew something was off. In 2020 my mental health issues declined rapidly and horribly with
Psychosis and hallucinations, panic attacks, couldn’t leave my house and refused to eat.
Luckily it got better when I was out on an antipsychotic, but it never fully has helped me and now I know why???
All my imbalance issues, headaches, extreme fatigue, memory problems and all the BS that comes with it all makes sense. But now I’m even more scared knowing about the seizures and feeling like I’ve had a few. Idk I’m so upset I don’t even know where to begin for this treatment.
And on top of it I have Lyme disease and high mood exposure 😢

I (17f) was diagnosed with autoimmune encephalitis this year in march. It progessed as follows:

I had really bad flu like symptoms (vomiting, fever around 38-41°C) for about 2 weeks. My mother called an ambulance after I presented with confusion and symptoms that loosely resembeld a psychosis. In the ER due to my history of epilepsy and the fact that I had a seizure 1 week prior they did a neurostatus on me wich I failed miserably. (Ex: "point to your fingers with your nose" my response was "huh? How?" Something like that)

I was admitted and treated for the fever and vomiting (I do not remember any of this). The morning after I was seemingly fine, could eat, fever free ect. I was just given a round of pain meds because I was tense around my neck and shoulders. After the IV pain meds finished (can't remember this part either) I went on to attempt to attack several nurses and my attending doctor and was given dormicum since they belived I was psychotic. After that I had a 40 minute seizure wich led to me being in the ICU and my eventual diagnosis with autoimmune encephalitis through an eeg. The infection was treated successfully with 2 rounds of IVIG.

They also did 2 lumbar punctures on me wich both came back clean so the reason as of why this happend is still unclear.

This whole ordeal left me barley functioning (not being able to go to school for more than 4 hours at a time), with tremors in both my hands, difficulties balancing and walking and my prior existing nystagmus getting worse. I've been receiving IVIG treatment every 4-6 weeks now and none of those symptoms, besides the fatigue wich improved a teeny tiny bit, get better. My tremor even seems to be getting worse.

The reason why I'm making this post is because my neurologist hit a wall they did every possible test on me (I don't 100% know wich ones but she said she did everything she could think of besides genetics). It's come to a point where other neurologists from other hospitals outside my state are consulting on my case.

I just want to know if anyone struggels/struggeld with the same or similar shit as me and what yall are doing to improve your quality of life because I can't keep living like that.

For those who have been diagnosed with encephalitis or have experience with it, can you tell me your experience with being diagnosed? I know how difficult it is to be diagnosed. My main question is, if none of the doctors are listening to you, how do you get the right testing?

So far, I have been to my GP, a functional medicine doctor, and the ER. None of them would give me an autoimmune encephalitis panel, lumbar puncture, or MRI. I know that generally, you need a neurologist to do so. I have been passed off by so many neurologists that they all just say that I have FND and send me home. So I’m trying to get a referral to an autoimmune neurologist, but they will only accept me if I have certain positive blood tests. Which I can’t seem to acquire from any of these doctors.

How the hell do I get the right testing done? And where do I go for that?

Having headaches and when waking up and balance getting worse and worser and speech and eye tracking problems getting worse and memory loss continues to get worse normal mri contrast ct and eeg for my brain but symptom almsor cured by steriods medicine but when finish my symptoms came back 5,5 feet tall male