#Autoimmune encephalitis

[bigticenergy1]

✨Dynamic disability ✨ my mobility aids and when I use them:

Living with multiple autoimmune conditions, an inflamed brain and Tourette’s makes every day different ✌🏻

(Keep in mind, mobility aids are only PART OF a treatment plan to manage a diagnosis or set of symptoms. It’s not recommended to use any mobility aid long term without professional guidance.)

[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.]

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Like & Reblog if you use!

(Reblogs can be private)

[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”)

[child0fcain]

did u actually have encephalitis????

indeed i did! still do kinda. quite unfortunately i must say,, its not a pleasant experience. the writers and directors for hannibal did a fantastic job of portraying the experience of it through will, its every bit as horrifying and not exaggerated which was pretty cool to see. i love spreading awareness about it whenever i can, so if you have any questions feel free to ask them!

[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.

[bigticenergy1]

My brain disease is literally all in my head.

"it's all in your head" correct! unfortunately I am also in there

[jerboaoa]

happy encephalitis awareness month! i didn’t post about anything on encephalitis awareness day itself because encephalitis is a very scary thing for me to talk about and i only feel comfortable saying so much, but i realized that if i saw a mutual post about it, it would probably make my whole year, so im last minute deciding to post about it on the last day of the month. massive hug to any other survivors who may be reading this, i cannot put into words how important it is to me that you’re alive right now.

[bigticenergy1]

Positive Tourette’s interaction story 🩵⚡️☺️

(This happened a while back and I told the story on TikTok then.)

My mom was giving my a ride to the dispensary and my tics were really ramping up in the car. So much so, that we had to pull over so I could move from the front to back seats. It can be dangerous to ride in the front with super active tics and my TS has already done lots of damage to the inside of the car. My tics can increase when riding in the car because it can make me feel trapped and out of control of what’s happening.

My mom dropped me off at the dispensary and headed to a grocery store that was in the same strip mall. I figured once I was out of the car, I would calm down and I wasn’t too worried because I know the owner of the dispensary (Justin) and the staff and they know that I have Tourette’s.

I got out of the car and my mom drove away and it’s like my tics exploded. I started having a violent tic attack. Screaming and punching a cement support beam. Within a couple of minutes, I realized that, I had to get off the street or someone would likely call the police.

So, I got into the dispensary as fast I could and was like “I’m having a tic attack. Do you have a bathroom?” Anywhere private that wasn’t outside in front of people. Justin led me into their back room area where they have a couch. He was so incredibly sweet and stayed for a while to make sure I was okay. He ended up having to go back up to the front of the store so his wife came and sat with me. She brought me water and let me hit her pen and within 20 or so minutes, my tics had calmed down.

I thanked them prefusely and they reassured me that any time I needed to chill in the back, I was welcome. They still offer for me to wait in the back if I’m ticcing a lot and the shop is busy. Ever since that day, I’ve gotten a (secret) 40% discount which we joke is my “Tourette’s discount.”

——

A couple of weeks later, I smashed a cart of hash rosin trying to grab it during a tic attack. I texted Justin and told him what had happened (to ask if they had any more in stock) and he said “come on over. I got you.” So, I went back to the dispensary and he gave me a free cart, equipped with a DIY “Tourette’s-proof” bumper. He had cut a pen gripper into three rings and slid them onto the glass of the cartridge and it works! Now, every time I get a new cart, he takes the rings off of the old one and puts them on the new one for me.

Justin told me that he also made some modifications to a smoking rig to make it easier for someone with cerebral palsy to use. I told him he should make a line of accessible smoking devices! Lol

I dunno, in a shitty ableist world, I like to remember instances and people like this.

[bigticenergy1]

Postictal stage of a seizure

[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????

[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

[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

[rambles-of-mental-illness]

Neurodiversity

Neurodivergence refers to variations in neurological functioning that diverge from what is considered typical or "neurotypical." While there is no single, universally agreed-upon list, neurodivergent disorders generally include conditions that affect cognition, behavior, perception, or social functioning.

1. Autism Spectrum Disorders (ASD)

Autism Spectrum Disorder (ASD)

Pathological Demand Avoidance (PDA) (controversial as a separate diagnosis)

Asperger’s Syndrome (outdated term, now part of ASD)

2. Attention-Deficit/Hyperactivity Disorder (ADHD)

ADHD (Predominantly Inattentive Type)

ADHD (Predominantly Hyperactive-Impulsive Type)

ADHD (Combined Type)

3. Learning Disabilities & Processing Disorders

Dyslexia (difficulty with reading and language processing)

Dyscalculia (difficulty with math and numerical processing)

Dysgraphia (difficulty with writing and fine motor skills)

Auditory Processing Disorder (APD)

Visual Processing Disorder (VPD)

Nonverbal Learning Disability (NVLD)

4. Intellectual Disabilities

Global Developmental Delay

Down Syndrome

Fragile X Syndrome

Williams Syndrome

Prader-Willi Syndrome

5. Communication Disorders

Social (Pragmatic) Communication Disorder

Speech Sound Disorder

Childhood Apraxia of Speech

Selective Mutism

6. Tic Disorders

Tourette Syndrome

Chronic Motor or Vocal Tic Disorder

Provisional Tic Disorder

7. Mental Health Conditions Often Considered Neurodivergent

Schizophrenia Spectrum & Other Psychotic Disorders

Schizophrenia

Schizoaffective Disorder

Schizotypal Personality Disorder

Delusional Disorder

Mood Disorders with Neurological Features

Bipolar Disorder

Major Depressive Disorder (long-term cases cause atrophy in brain regions like the hippocampus)

Dysthymia (Persistent Depressive Disorder)

Anxiety & Related Conditions

Obsessive-Compulsive Disorder (OCD)

Generalized Anxiety Disorder (GAD) (sometimes considered)

Panic Disorder (sometimes considered)

Trauma-Related Disorders (sometimes included)

Post-Traumatic Stress Disorder (PTSD) (when it significantly alters cognition and sensory processing)

Complex PTSD (CPTSD)

Dissociative Disorders

Dissociative Identity Disorder (DID)

Depersonalization/Derealization Disorder

Personality Disorders (Not all PDs)

Borderline Personality Disorder (BPD)

Antisocial Personality Disorder (ASPD)

Narcissistic Personality Disorder (NPD)

Schizotypal Personality Disorder (StPD)

8. Sensory Processing Differences

Sensory Processing Disorder (SPD) (not formally recognized in DSM-5 but widely acknowledged in neurodivergent communities)

9. Epilepsy & Neurological Conditions (sometimes considered)

Epilepsy

Migraines with Aura

Chronic Traumatic Encephalopathy (CTE)

10. Other Conditions Sometimes Considered Neurodivergent

Hyperlexia (advanced reading ability with comprehension difficulties)

Synesthesia (cross-wiring of sensory experiences)

Ehlers-Danlos Syndrome (EDS) (due to high comorbidity with neurodivergence)

Autoimmune Encephalitis (when it affects cognitive function)

Neurodivergence is a broad and evolving concept, with some conditions more widely accepted as neurodivergent than others. The core idea is that neurodivergent individuals experience the world in ways that differ from neurotypical standards, often due to innate neurological differences.

[bigticenergy1]

The audacity

Friendly reminder for ya’ll here too ✌🏻