#Autoimmune encephalitis

[detentiontrack]

what is PANDAS? /gq

This is a very long infodump but here’s my story!

It stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections! Basically when I was 10, I got a normal case of strep throat. The same kind that every kid gets in childhood. I got on antibiotics and felt better, but overnight (literally overnight. I was completely fine the night before and then it started February 22nd 2016) I started having SEVERE. OCD and anxiety symptoms. It was debilitating. I couldn’t eat, sleep, or function. I was having panic attacks, constant obsessions and compulsions, terrifying intrusive thoughts, and hallucinations. I also started developing tics. I was 10 and it happened overnight, so it wasn’t likely obsessive compulsive disorder or Tourette’s, especially because I didn’t have a family history of those things.

After multiple doctors, a nurse practitioner finally thought to test me for strep antibodies and it was positive. I got started on high dose antibiotics that destroyed my teeth and digestive system, but after 11 months I was still getting strep throat every other week, which would cause me to flare.

At 11, I got my tonsils out, and it helped a bit, but then I started losing function in other areas. At that point, it had spread to my entire brain and it turned into severe encephalitis. I had constant violent tics, debilitating mental illness symptoms, and I was losing the ability to walk and talk. The right side of my body was completely useless and the left side wasn’t much better. I couldn’t talk without a stutter, aphasia, and forgetting how to speak.

At age 12, I got my first bought of IVIG, which helped a little bit, but unfortunately we had shitty health insurance at the time and they wouldn’t cover any more even though I was getting worse by the day. At this point we didn’t know I had encephalitis, we thought I only had PANDAS and PANDAS wouldn’t cause that severe of a reaction on its own. So it was extremely scary. They were testing me for everything they knew, but encephalitis, especially in kids that young, wasn’t super well researched at the time. I had countless tests and everything was coming back “clean”.

Eventually, my mom and I went to every doctor in California that would see us. Even the ones not covered by insurance. At 12, since we saw every neurologist and rheumatologist that would see me in our state, we went to Arizona to see a PANDAS specialist. She recommended me a lot of herbal medications that kept me alive and helped a lot, but since she was in a different state, she couldn’t prescribe any actual medication. But those herbal medications kept me going long enough. That’s when we found out I also had fibromyalgia and my thyroid had failed as a side effect of the encephalitis.

When I was 13, I saw a doctor who diagnosed me with POTS, prescribed me POTS medication, and did a lot of tests to try and find out WHY I was losing the ability to walk and talk. She did a nerve conduction test, MRIs, CTs, and a test where they removed huge chunks of my flesh and tested the nerves (idk what it was called?) however there was no baseline for someone my age for any of the things she was testing for, so we only had a set baseline for if things got worse.

When I was 13, almost 14, I couldn’t walk or stand without a cane, even with a cane I couldn’t walk for very long, and I was very nearly at the point where I needed a wheelchair full time. My speech and tics were terrible, I remember barely even being able to think or process what was happening because the brain inflammation was so severe. I FINALLY got in with a rheumatologist at UCLA who specialized in PANDAS, and he finally was able to get insurance to pay for a years worth of IVIG.

I was on high dose IVIG for a year, and it saved my life. Very slowly, I got better. My OCD stopped, I could talk again, my tics stopped, and I very slowly got back feeling in my body. I couldn’t afford speech therapy or physical therapy at the time, so I had to teach myself how to walk and talk again. 5 years later, I have 100% feeling and function in my right arm, and I can feel most of my right leg, except for my foot and random patches on my thigh and calf. I talk fine most of the time, but if I’m tired, I’ll start slurring my words and occasionally words for things will just. Slip out of my brain and I can’t remember them so I have to improvise. (Yesterday the word for pencil disappeared from my brain so I asked my sister for “the thing that’s like a pen but is gray and you can erase it”)

[disabled-sysboxes]

[TEXT ID: this system is brain damaged and cognitively disabled due to autoimmune encephalitis, please be patient]

[IMG ID: a light pink rectangular box with an icon of a side profile of someone's head with a cog that is snapped in half sitting where the brain would be to the left, and the text 'this system is brain damaged and cognitively disabled due to autoimmune encephalitis, please be patient' to the right.]

–

Like & Reblog if you use!

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[kaz-of-crows]

today is world encephalitis day and it brings awareness to a very rare and terrible illness. one of my family members has this disease and it is truly awful. it is so painful to see her struggle every day but she also brings so much light into the world. despite her uncontrollable movements and words, her periods of unresponsiveness, and the many hours of medical treatment each week, she stays kind and optimistic, more so than i ever could.

with lack of awareness comes a lack of care from the medical community. hospitals that are considered the absolute best in the country dismiss this condition without a second thought. they claim the patient is faking or has psychiatric issues. as a disclaimer, mental illnesses are 100% real and devastating. however, dismissing a physical problem as psychiatric, even when therapists and psychiatrists say that this is incorrect, is awful and leads to the worsening of the condition.

[myrawjcsmicasereports]

Covid-19 associated autoimmune encephalitis in Iraq. A Case Report by Faiq B. Basa in Journal of Clinical Case Reports Medical Images and Health Sciences

Abstract

Covid-19 infection frequently causes neurological symptoms. One of the mechanisms of indirect nervous system involvement is through inflammatory response and immune dysregulation. There are few recorded cases of indirect involvement of CNS by auto-antibodies. We present a case of a 6-year-old Iraqi boy with anti–N-methyl-d-aspartate receptor (anti-NMDAR) autoimmune encephalitis, associated with Covid-19. He presented with recent repeated attacks of refractory focal seizures preceded by behavioral changes. Serum and CSF anti-NMDAR antibodies were positive. Early recognition and treatment of autoimmune encephalitis are crucial as the prognosis is promising with early immunotherapy. Autoimmune encephalitis should be included in the main differential diagnosis whenever refractory epilepsy or new onset status epilepticus is faced. In the era of COVID-19, high vigilance is required as a possible association may increase autoimmune encephalitis incidence.

Key Words: Autoimmune encephalitis, Covid-19, refractory seizures, Anti-NMDA receptor encephalitis.

Introduction

The new coronavirus disease (Covid-19) was initially detected in Wuhan, China, in December 2019 [1]. There are now established Covid-19 cases with neurological symptoms, which developed either through direct harm of the central nervous system (CNS) caused by the severe acute respiratory syndrome coronavirus 2 (SARS‑CoV‑2), or via autoimmune processes [2, 3]. Several neurological complications have been described: encephalitis, meningitis, cerebrovascular diseases, acute disseminated encephalomyelitis (ADEM), and encephalopathies [4, 5].

Encephalitis is an inflammatory condition affecting the brain. Its etiologies are diverse. There are two main types of immune mediated encephalitis: (1) the paraneoplastic encephalitis syndromes, often associated with antibodies against intracellular neuronal proteins (onconeuronal proteins) [6]; (2) encephalitis syndromes associated with antibodies against neuronal cell surface/synaptic proteins, known as autoimmune encephalitis (AE) [7]. While paraneoplastic encephalitis syndromes are invariably cancer-related, autoimmune encephalitis syndromes may occur in the presence or absence of cancer.

AE includes a spectrum of disorders depending on the type of autoantibodies that are directed against various receptors and synaptic receptors and channels. The most common type of AE is the anti–N-methyl-d-aspartate receptor (anti-NMDAR) encephalitis, which was first described by Dalmau and colleagues in 2008 [8].

More recently, many new antibodies targeting neuronal surface antigens and synaptic proteins causing different forms of AE have been discovered, including those caused by autoantibodies targeting GABAB-R, GABAA-R, α-amino-3-hydroxy-5-methyl-4-isoxazolepropionic acid receptor (AMPAR), and contactin associated protein-like 2 (CASPR2), leucine-rich glioma inactivated 1 (LGI1), dipeptidyl-peptidase-like protein 6 (DPPX), Ig LON5, and others [9]. Additionally, AE might be the diagnosis behind new onset refractory seizure or status (NORSE), atypical movement disorders, rapidly progressive dementia of unknown etiology, or psychiatric and behavioral disturbances, sometimes mistaken for primary psychiatric illnesses [10].

In addition to the established association of AE with tumors like, e.g., ovarian teratoma in anti-NMDAR encephalitis, also the possibility of an association with SARS-CoV-2 infection arose. At present, there are few reported cases with positive anti-NMDAR encephalitis in association with COVID-19 [11, 12]. Nevertheless, this possible association will need more attention when neurologists, psychiatrists, and physicians face cases of unexplained refractory seizure and/or psychiatric manifestation.

Here, we report a unique case of a 6-year-old boy who presented with repeated attacks of refractory focal seizures, associated with autoimmune encephalitis.

Case Report Presentation

The parents of a 6-year-old boy from Erbil, Iraq, with normal perinatal and developmental history and no other known medical illnesses noticed an unusual decreased physical and cognitive activity, as new-emerging eating disorders. After a few days, while sleeping, the child developed abnormal body movements restricted to the left face and left body side with impaired consciousness. Therefore, he was taken to a pediatric emergency department.

After admission, the focal seizures, altered consciousness, and fever continued for two weeks. Consequently, he had to be intubated for 5 days in a Respiratory Care Unit (RCU), from which he was discharged after the seizures became less frequent. As per clinical findings, the patient was drowsy and mute, he had orofacial dyskinesia, and spastic quadriparesis, with infrequent focal seizures.

A brain MRI showed bilateral deep white matter cerebral hemisphere increased T2/FLAIR signal . EEG detected diffuse slowing and abnormal epileptic discharge .

Cerebrospinal Fluid (CSF) was clear and colorless. CSF glucose level was 55.7 mg/dL, and CSF total protein 14.6 mg/dL. No abnormal cells were detected. CSF oligoclonal bands (OCB) were positive. Real-time polymerase chain reaction (RT-PCR) assay was positive for severe acute respiratory syndrome coronavirus 2 (SARS‑CoV‑2). Central Nervous System (CNS) tuberculosis and Viral Encephalitis were excluded by Cerebrospinal fluid polymerase chain reaction (CSF-PCR) assays. Serum and CSF anti-NMDA receptor IgG Ab were positive.

The therapeutic intervention started with intravenous (IV) methylprednisolone therapy (15 mg/kg/day) for 5 days, followed by intravenous immunoglobulin (IVIG), according to the high-dose immunomodulatory therapy strategy (1,000 mg/kg), for 5 days [13]. Anti-seizure medication (ASM) was commenced as well.

In the following weeks a mild improvement in terms of enhanced consciousness, limbs movements, and weight gain was observed. Therefore, the nasogastric tube was removed, and oral feeding restarted. We monitored the child through regular evaluations and biochemical analyses until complete clinical recovery. ASM was not discontinued. The overall treatment was well tolerated.

Discussion

Autoimmune encephalitis is a condition that can be easily missed as it is not commonly considered in the differential diagnosis of various medical presentations. However, such diagnosis should be always taken into consideration when a person, particularly a child, presents with a new onset of refractory status epilepticus (NORSE) and/or new behavioral or psychiatric conditions. An early diagnosis of AE is essential, as the treatment is different from other conditions. With correct timely interventions the outcome is frequently favorable.

Though SARS-Cov-2 virus rarely invades the nervous system, Covid-19 infection frequently causes neurological symptoms like headache, delirium, anosmia, and dysgeusia [14]. One of the mechanisms of indirect nervous system involvement is through inflammatory response and immune dysregulation. There are few recorded cases of indirect involvement of CNS by auto-antibodies that are directed against the surface and synaptic protein. This case is one of the rare cases of Anti NMDA antibody autoimmune encephalitis that is associated with Covid-19 infection [15]. It indicates that in the era of COVID-19, high vigilance is required as a possible association may increase AE incidence.

A recent systemic review that analyzed 16 studies, including a total of 161 patients with NORSE [16], showed that the most frequent cause was AE. In addition to the well-known association with teratoma and cancer, AE, and specifically Anti-NMDA receptor Ab encephalitis, could be associated with a SARS‑CoV‑2 infection, either concomitantly or as post-infection manifestation. In this reported case, immunotherapy, in addition to anti-seizure medication, showed to be effective.

The main limitation of this report is the relatively short follow-up period. Observation of the child is ongoing to detect possible medium- or long-term consequences.

Conclusion

This case demonstrated that autoimmune encephalitis should be always considered when facing a new onset of refractory epilepsy and/or abnormal behaviors, and that it could be associated with SARS-Cov2 infection. Early diagnosis of an autoimmune encephalitis and ensuing correct treatment can be lifesaving.

Statement of Ethics: The parents of the child involved in this study have given their written informed consent to publish his case (including the publication of images). Ethical approval is not required for this study in accordance with national guidelines.

Conflict of Interest Statement: The authors have no conflicts of interest to declare.

Funding Sources: This case report required no funding.

[tricksea2794]

Fundraising for medical funds for Autoimmune Encephalitis

Asking kind hearts for my cancer survivor mom fighting for Autoimmune Encephalitis.

Fundraising for medical funds and hoping people will help.

PayPal trickseaxXx@gmail.com

#fundraising #cancerdonation #autoimmuneEncephalitis #help #medicalhelp

[livingwithautoimmuneencephalitis]

IT IS GOING TO BE A GREAT YEAR !

[skeleticcs]

What is PANDAS/PANS?

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Syndrome Associated with Streptococcal Infections (or just strep) and PANS stands for Pediatric Acute Onset Neuropsychiatric Syndrome. As the name suggests, PANDAS is caused by strep-related infections whereas PANS can be caused by any other infection or sickness, even things like the common cold and mold in the home.

How does someone develop PANDAS/PANS? When a person gets sick the immune system attacks the infection to get rid of it, but in some people the immune system gets messed up and attacks the basal ganglia(a part of the brain) instead of the infection, which in turn causes brain inflammation. Brain inflammation can cause a wide range of symptoms such as hallucinations and delusions, obsessive compulsive behavior, depression and anxiety, tics, dystonia, chronic pain and fatigue, derealization/depersonalization/dissociation, disordered eating behavior, memory loss, brain fog, selective mutism, etc. Not every person is going to have all or even most of the symptoms, and the symptoms themselves tend to come and go. Typically symptoms flare up every time the person gets sick/has another infection in their body.

As someone who has PANS, it’s really important to recognize and clock this disease before it can get too far. It affects 1 in 200 children and you never know when it will be massively important to recognize it. It destroyed my life- all because I got COVID and my immune system messed up. I’m lucky that I got diagnosed and recognized within two years of having PANS, because so many people aren’t that lucky. Even reading this whole thing has helped you to bring more awareness and possibly help someone else. If you have any questions please ask, because I’m more than open to answering them!

[mosspapi]

My appointment with my doctor is on Friday but apparently my mother is making us go to ikea on Wednesday. I'm still laying in bed basically all day from last Friday. How does she expect me to go to ikea while I feel like this AND be able to have a coherent conversation with my doctor on Friday. I'm gonna lose it

[inflamedbrain1324]

hey! i guess i’ll just start by intro. i’m new here so i kinda just wanted to come on here maybe share some posts i’ve found that i relate to occasionally from instagram or pinterest. i’m kelsey i’m 20 years old. i was diagnosed with PANDAS syndrome in 2012 when i was 9 and was diagnosed with refractory epilepsy in 2016 when i was 13 almost 14. i’ve had 750 seizures this year alone and over 2000 seizures since April 2022. i had fever of unknown origin at 18 months until i was 4 and i had Kawasaki disease when i was 6. I also had autoimmune encephalitis when i was 15. so that’s basically the rundown. hopefully in any way i can help <3💜💚

📸: pinterest

[satisfiedskye]

I COULD USE SOME HELP

i hate to do this so much, but im asking for some help. i have to get my meds for the month soon (i actively take roughly 18 diff pills, per DAY, for reference) and i also have to pay some debt every month, but i only have 15 dollars in my bank acc atm :,) if any of u could like, share this post around and/or d0n4te that would be very helpful- im really sorry about this

[detentiontrack]

When I was 10/11 I had strep throat basically every single day for 2 years because the bacteria lived in my tonsils so I kept getting reinfected every time the antibiotic course ended (I was also on high dose antibiotics every day for around 3 years but that’s another story) and when my tonsils were removed, the very experienced ENT told me that they were hands down the worst tonsils she had ever seen in her life. She described them as “swiss cheese” with craters and holes. My biggest regret in life is that I was never able to keep my tonsils after removal because they had to be sent to a lab. Imagine if I could have kept them in a jar and used them as room decor????

[milesplayshu]

cw: death and illness

I haven't seen anyone talk about it on tumblr, so I'm bringing the bad news from twitter.

The voice actress behind Dead By Daylight's Unknown, Zoey Alexandria Wendorf has passed away on April 30th. After a long time battle with an autoimmune disorder, (GAD65 based Non-paraneoplastic Limbic Autoimmune Encephalitis and Stiff Person Syndrome). There wasn't long term cure, and the treatments she received had side effects she described as "absolutely horrendous", so a couple months ago she decided to permanently stop receiving them.

Unfortunately, that means her illness progressed much faster and today it has been announced in her obituary that Zoey passed away.

Rest in peace 💔

[pesky--dust]

We all laugh (or get annoyed) at Jack for being stupid. I do it myself, but let me stand up for him right now.

Let me start quite obviously: Jack had no ill intentions when he brought Will Graham into the FBI's work. He was convinced that Will could save lives and was ready to support him in that — he wanted Alana Bloom to be his psychological support, and when she refused, he went to the psychiatrist she recommended — Hannibal Lecter.

Yes, I'm annoyed myself with how he keep putting pressure on Will (e.g. episode Coquilles: "You go back to your classroom and there’s more killing that you could have prevented, it will sour that classroom forever") and his way of thinking, which he admitted to Hannibal Lecter in Buffet froid, which I will show with a fragment of the script of the said episode:

(that feeling when you agree with cannibalistic serial killer)

It was after Coquilles in which Will said that he want to quit because it is bad for him, so no Jack, I don't think Will feels the same way.

But this post was supposed to be a defense of Jack Crawford, so let's get back on topic.

Jack didn't know the truth about Hannibal, he didn't know that Will had autoimmune encephalitis, and he had no reason not to believe Hannibal that what was wrong with Will was psychological. After all, Dr. Lecter was the psychiatrist recommended to him! And Jack had every right to believe that Hannibal was giving Will the psychological help he needed in his work with the FBI.

And Hannibal prepared the ground for the version that Will has a mental disorder. The story that Hannibal presented made sense: due to his empathy disorder, Will began to believe that he was G.J. Hobbs and continued his work, ultimately taking the life of his daughter.

Jack recruited Will to work with the FBI, believing in his abilities, but Hannibal made him believe that the job had broken Graham mentally. And it's not unusual for disappointed patients to blame their therapists, so it would be quite a natural turn of events for Will to start claiming that Hannibal is the copycat killer, just to avoid being the one to blame. And there was no evidence against Hannibal, because he took care of it.

And now let me focus on the episode titled Yakimono.

Miriam Lass turned out to be alive. Hannibal's partial fingerprint was found at the place where she was held! And on top of that, Dr. Chilton referenced a cannibalistic joke he heard from Hannibal! And Jack ignored it all!!!

But are you sure? In my opinion, he was already planning to use Will again. I think Jack started to suspect something when Beverly Katz was murdered. In Futamono, he tested the food served at Hannibal's party. No human flesh was found there. With Yakimono though, Will's honey pot act in regards of Hannibal begins.

And my theory may seem to make no sense to you, but let me dig into it.

Let me show you a deleted scene from Kaiseki which I find particularly important, crucial one, here:

Tl;dr: Hannibal is social anti social, Will can shape him somehow, because Hannibal believes that Will is as unique as him himself.

Which leads to the conclusion that…

To catch Hannibal, the FBI must take advantage of his weakness towards Will.

And during his honey pot act, Will was still working with Jack, so why wouldn't Jack trust him? However, in Mizumono, Will called Hannibal, warning him, which led to the bloodbath, so why, even after hearing in Aperitivo that Will wanted to run away with Hannibal and a part of him would always want to (Dolce), did Jack continue to trust him? I think it was because Jack thought Will blamed himself for Abigail's death and since he was trying so hard to be a parent to her, he thought that if he ran away with Hannibal, Abigail would be still alive. And in the end, Will "got" Hannibal arrested, right?

Why did Jack allow Hannibal's fake escape in The Wrath of the Lamb and involved Will in that?

In my opinion it connects with the paragraph from earlier. Three years had passed, Will had gotten married, adopted his wife's son, so he had mentally recovered from the bloodbath and the death of his surrogate daughter, right? He told Jack he was really happy, right?

Will may have warned Hannibal and wanted to run away with him, but he was the reason Hannibal was caught. Three years have passed and Will has gotten himself together. In front of Jack he was playing (at least partially) about how he doesn't want to be drawn into the "game" he was playing with Hannibal again, he warned Molly that when he came back he would be different (he didn't come back), he said Alana that seeing Hanniabal for the first time in three years made him feel like Hannibal was looking through to the back of his skull; felt like a fly flitting around in there (... and the Woman Clothed with the Sun), he assured her that he wouldn't let Hannibal into his head again. Will seemed to be traumatized by all this. Up until...

This is the scene where Will is in Jack's office watching what the Dragon has done to Chilton (The Number of the Beast is 666). He looks terrified, panicked, and then suddenly… he becomes sort of relaxed, calm? Would you agree with that? I guess so. But have you ever noticed that there is a transition between these two reactions? It is in front of Jack and Alana that he is terrified, in front of Bedelia he is calm and admits to her that maybe he exposed Chilton to the Dragon on purpose because he actually hates him (just like in the book, although in the book he set Freddy Lounds up to the Dragon).

Will played in front of Jack until the end. Even when suggesting using Hannibal as bait, Will pretends he's not 100% sure it will work, even though he already had a deal with Francis Dolarhyde (The Wrath of the Lamb). It was us as the audience who knew this, not Jack.

I think that Jack believed Will, because he wanted to; it was his way of trying to rehabilitate himself after what Will had to go through because of him because Jack didn't believe him from the beginning that Hannibal was the Copycat. I think that after it turned out that Hannibal was not only the Copycat Killer, but also the Chesapeake Ripper, Jack decided to never doubt Will's abilities again. And that doomed him, just as Kade Prunnell and Alana Bloom predicted.

[horsesource]

“We conclude that [autoimmune encephalitis] may either act as a potentially causative agent for ASD, and/or produce symptoms that could easily be mistaken for or misdiagnosed as autism. Further studies are required to discern the connection between AE and autism.”

[willgrahamscock]

If there is a season for I just want Will's autoimmune encephalitis have a flare up so that Hannibal can actually help out this time

I prefer it when Hannibal makes Will suffer and vice versa but to each their own I like them toxic

[mooredanxieties]

Chinese Herbal Silkie Chicken Soup

A popular immune-boosting elixir

Most often, a main ingredient of this soup is the Chinese Yam, a recommendation substitute for potatoes (a Nightshade vegetable) for those with autoimmune disorders because of its anti-inflammatory properties

Hannibal notably left out this ingredient in the soup he gave Will.

Treatments for Anti-NMDA Receptor Encephalitis:

Immunomodulatory/immunosuppressive therapies

Anti-seizure medication

Autoimmune Protocol Diet (AIP): a diet tailored to reduce inflammation, pain, and other symptoms caused by autoimmune diseases

Of the 5 ingredients Hannibal listed, 4 of them are potentially harmful for those with autoimmune disorders:

Wolf berries ("Goji Berries") - A 'Nightshade Vegetable', recommended to avoid if you have an autoimmune disorder

Red Dates ("Chinese Dates" or "Jujube") - The extract has been found to interact with some seizure medications

Ginseng ("Ginseng Root") - Studies have shown it can boost the immune system and exacerbate autoimmune diseases at the same time

Star Anise - Recommended against, according to the official AIP diet for people with autoimmune conditions

Hannibal enjoys creating situations where Will feels compelled to seek comfort (whether physical or emotional) from him, because he enjoys when Will needs him. He enjoys providing Will comfort, and he feels no guilt causing Will to need that comfort.

His actions are always multifaceted.

Giving Will a comfort food that often holds friendly/familial/romantic connotations and ALSO causes Will to be more dependent on him is a 'killing two birds with one stone' plan.

Sweet and cruel in equal measure