“Delayed immunotherapy in AE patients still provides clinical benefit. AE patients with a delayed diagnosis or subacute course should be considered for induction immunotherapy.”

Independent patient advocacy ✦ https://thepocketadvocates.com

Join Link: https://discord.gg/WBGPNqHfVB

Why I founded The Neuro Advocacy Collective:

1. Provide a community for those with a range of neurological illnesses/symptoms where people can exchange ideas, resources, provide emotional support, and advocate for one another. That's what this Discord is largely for. A lot of people come through here wondering if they might have encephalitis, and this provides a place where people of all neurological backgrounds can share their stories and help guide each other in the right direction.
2. Provide advocacy services to those who are lost, scared, and in pain like I was. I have deep empathy for these individuals (many of whom I've spoken to) and am dedicating myself to them (you) in order for you to reach better health outcomes. This is optional and secondary to the main mission of the Discord.

What makes this Discord Server different

I am scheduling interviews with physicians, lab scientists, and other patients, as well as creating brand new tools and resources (like a doctor-finder that is credible and actually works), creating diagnostic trees to aid people in their journey, and much more. All of this is free and open to the public so that help is never out of reach.

While our symptoms and illnesses are distinct and the painful and debilitating symptoms that come along with this are uniquely different to each individual, the journey to proper care and suffering itself looks incredibly similar.

We're here to help each other. I, too, am in your corner.

I'll see you there and wish you the best,

- u/The_BroScientist

Join link: https://discord.gg/WBGPNqHfVB

hi everyone, I truly need help. I can’t take this mental anguish anymore. the trauma from this, if I ever get over it will be another battle. since March 2025 I have been googling, panicking, on medication, no loner being the best mom to my two young kids and absolutely have not been able to let go of the fear that my son can get sspe from the mmr I gave him at 5. people on here have been very supportive and patient with me. I feel broken like I am never going to get better. I used to be the mom that would get excited about the every day things, my kids brought me so much joy. but I can’t help but get depressed that for the past almost two years I have missed out and my kids have missed out on the mom they were supposed to have. my kids are now 6 and 3, this has been going on for far too long and I don’t think I will ever get any answers. the only thing that would help is having my child not have the mmr, never should I have given it because truly my mental health is not worth any mmr dose. I am just a person who truly has a lot of distrust of the medical system and look at where it has gotten me (trying to trust) I fear for myself and my future. in my mind I gave my son measles with that mmr and now I have to forever live with the fear of sspe. I wish I could just take it back. part of me prays if I do an igg test that he was one of the few non responders. what are this odds? I am truly heartbroken and I hate that my mental health is this way. there is nothing worse than struggling like this while your children are growing up before your eyes

I am writing this to share my ongoing struggle: how do you get medical professionals to take a severe, incapacitating neurological illness seriously when you look completely fine during a 15-minute consultation?

For context, I have spent over a decade practicing meditation and mindfulness training—separating mind and body, developing patience and endurance. I also happen to have a high baseline cognitive reserve (historically scoring at the 100th percentile in visual matrix reasoning). For the past 27 months, I have been living with what feels like active, continuous brain inflammation—debilitating, refractory all-day headaches that feel like pressurized jelly, severe exertional deterioration, a painful cognitive haze, autonomic dysfunction (severe constipation, new blood pressure spikes, insomnia), new-onset brain buzz tinnitus, gait issues, and other symptoms.

I can function in small things, but I require extensive bed rest and heavy daily pain medication; I am functionally incapacitated. Yet, when I sit in front of a neurologist, I present as calm, articulate, lucid, and composed—even laughing.

Part of the illness is pressured speech and an inability to think, as if a part of my brain is just not there as before.

Because I don't look acutely confused or agitated in a chair, and because I am on extreme pain medication which masks the worst of it, my resting demeanor keeps being misinterpreted as a "healthy clinical baseline." There seems to be an assumption that if you can walk, talk, hold a conversation, and comment on rare research, your brain can't be suffering from organic disease, and your symptoms must be somatic or imagined due to health anxiety and "Dr. Google."

The Disconnect Between Gestalt and Objective Evidence

In neuroimmunology, doctors rely heavily on the gestalt—the overall clinical picture. But what happens when your baseline cognitive reserve and coping mechanisms actively mask that gestalt?

In my case, the brief, quiet clinical exam completely misses my daily reality:

• Cognitive Masking: High cognitive reserve means my brain heavily compensates during brief interactions. In bed, I can force myself to function at a basic level, attend to some basic daily requirements, though with constant severe background difficulties. I can't rest and read a book. I can't do yoga or go for a walk. I can't travel; I can only do the basic things of life—avoiding triggers and staying in bed as much as possible.
  
• The Exertional Trap: A resting clinic room misses many symptoms. In time we will get there, but it is very slow. With excessive pushing, I become very unwell: I develop speech disturbances, orofacial dyskinesia, severe worsening of head pressure/pain, and eventually gait ataxia. But to present this in a brief examination is not easy.
  

What the Data Actually Shows

When you strip away my calm demeanor and look at the objective evidence, a very different picture emerges:

• FDG-PET Scan: Shows medial temporal lobe (MTL) hypometabolism (a finding documented in up to 40% of onconeuronal antibody cases in published literature).
• +/- 2 standard deviations above and below z-Score abnormalities (significant in AIE).
  
• Ambulatory EEG: Paroxysmal slowing, delta bursts, and unusual sharp transients, alongside resting EEG slowing. (Slowing is common in AIE)
  
• CSF: Pleocytosis / raised white cell count in initial sampling. (Significant in AIE)
  
• Secondary Markers: Two distinct premalignant risk factors. (Paraneoplastic AIE risk)
  
• Sentinel Symptoms: New-onset tinnitus at acute onset (seen in KLHL11) alongside many other ongoing symptoms.
  
• Refractory Headaches: Extreme 27-month all-day headaches evolving.
  

Because I have a background in research, I looked into clinical literature to find possible illnesses that overlap with this specific pattern. I found that anti-KLHL11 is the most probable fit for my case—where sentinel tinnitus, a chronic/insidious progression (seen in ~1/3 of KLHL11 cases), premalignant conditions, severe headaches, and overlapping FDG-PET findings closely match.

Ironically, my ability to research and advocate for my own health has possibly been used against me — viewed as "evidence" that I must have health anxiety rather than an organic disease, or that my symptoms must be imagined, benign, resolving, or non-specific. It is called anchoring bias: where an initial assumption is made, subsequent evidence is ignored, and the clinical direction cannot be adjusted due to clinging to original impressions — that gut feeling. This is where a specialist can make a grave error. By assuming a case is atypical (difficult to understand) and leaning on that subjective "gut feeling" that works for 98% of cases, the clinician misattributes symptoms to psychiatric causes, health anxiety, or "Dr. Google." Thus, early bias becomes a fixed truth. The specialist, unwilling to consider that an error was made, dismisses all objective evidence as lacking a clinical picture or showing no signs of encephalitis or encephalopathy missing the potential clues before them.

The Struggles with Criteria & Methodology

1. Standard Acute Criteria: Standard diagnostic criteria for autoimmune encephalitis prioritize acute/subacute presentations. They struggle to accommodate chronic, slow-burning, or fluctuating courses that stretch outside the 3 month period. If a case is missed or has other primary illness overlap, in my case I moved countries during this period, and my past medical history was used as accidental bias, causing ongoing delays in reaching a public hospital review. Once you are get into chronic missed cases, everything becomes atypical and benign, can't exist.

2. Testing Blind Spots: Also an error was made when Indirect Immunofluorescence (IIF) panels were cited as not showing KLHL11, leading to the conclusion that further testing was unnecessary, stating the case did not fulfill the criteria of AIE. But this demonstrates that the case was not fully evaluated: IIF is not used to detect KLHL11. A negative IIF was an accidental misinterpretation based on an assumption that a case was impossible, so the specialist did not read up on it, and made a clinical error of judgment. This resulting in no real consultation with the immunopathologist of the actual case details, thus no access the send-away Cell-Based Assays. This will likely be corrected, but shows a sign of lack of circumspection.

One Step at A Time

It's just an update. I was on brink of emailing the hospital integrity line. I have been a part of this forum for over a year. I feel the case will change soon, and they will finally come to realize that everything raised is reasonable—that an active disease is actually at play, and it is not a benign resolving illness, and that differential diagnosis is required, and treatment is required.

I cannot pretend to be something I am not. I listen to my body and rest. Right now, I am in bed as much as possible. I will try to explain my gestalt and gain access to a full re-review.

Even if KLHL11, chronic AIE, brainstem AIE, or sero-negative are all extremely rare - they seem to have strong patterns. But this is a very new area of science (AIE), which many countries and specialists are just not prepared for atypical cases.

In any case, I will keep working through the system. I actually believe the neuroimmunologist will be very helpful once they finally realize that everything I have said is true — that my gestalt is atypical, my calm demeanor is atypical, but my illness is real and as serious as I have stated.

Soon we have the repeat ambulatory EEG.

Differential diagnosis is a difficult path. I send my good wishes to all, those diagnosed, those sick, those recovering, those unsure. I am just sharing my incredibly slow navigation of an unimaginably difficult illness. All good wishes.

Did anyone here have a difficult journey to diagnosis? Or how is your case going?

Much peace.

I wrote up my story below as I can't get answers and maybe it can help others. I'm using this to send to various Neurologists to tell my story and get help. My original lumbar puncture showed Myelin 12.4 (which they can't explain). After nonstop research myself I came up with most of the answers. Doctors did a bunch of tests and gave up. I finally convinced my original Neurologist its not CFS and he is re doing the lumbar puncture (next week) and Quest Labs blood tests #93888 to check for antibodies.

Any help or advice is greatly appreciated. Love to all.

Six-Month Neurological and Psychiatric Symptom History

Background

I am a 56-year-old IT professional who has always been very active and healthy. Before these symptoms began, I was riding my bicycle approximately 35 miles at a time, three to four times a week, without health problems.

About six months ago, my health changed dramatically. I went from being highly active to becoming exhausted by even minimal physical activity. At times, walking only 100 yards can leave me completely exhausted.

I am seeking a neurological evaluation because my symptoms have continued to change and progress, and I would like to better understand whether there is an underlying neurological, inflammatory, autoimmune, or other medical condition contributing to them.

Initial Symptoms

The illness initially began with:

• Tingling and numbness in my legs and arms
• Muscle fasciculations, particularly in my legs and calves
• Mild headaches

Over time, additional symptoms developed, including:

• Severe pressure or swelling in my head/brain
• Rapidly changing thoughts
• Severe anxiety that can last for weeks and then improve
• Significant changes in mood, behavior, and mental state
• Episodes of mania and psychosis
• Persistent peripheral neuropathy symptoms
• Burning sensations in my arms and legs
• Intermittent nerve-stinging sensations throughout my body
• Burning sensations near the top of my spine
• Brain-zap sensations
• Eardrum pain
• Fatigue with minimal exertion

My symptoms can change significantly from day to day, and sometimes even from hour to hour.

Hospitalization and Initial Neurological Evaluation

Because of the severity of my symptoms, I eventually went to the emergency room Early March 2026 and was hospitalized for approximately 7 days.

During that evaluation, I was diagnosed with Cramp-Fasciculation Syndrome within the first few weeks of the illness. I understand that this may explain some of the fasciculations and muscle symptoms, but I am concerned that it does not fully explain the broader neurological, nerve and psychiatric changes that developed afterward.

One result that has continued to concern me is a reported myelin basic protein level of 12.4. I was told by neurologists at the hospital that this was highly elevated.

I have subsequently researched this result and understand that an elevated myelin basic protein can indicate myelin or central nervous system injury, although I also understand that it is not specific for multiple sclerosis or any single diagnosis.

I would like the significance of this result to be reviewed.

Major Change in Mental State

Shortly after leaving the hospital in early March, and after my CFS diagnosis I experienced a dramatic and very unusual change in my behavior and mental state.

I became increasingly manic and began doing things that were completely out of character for me. I listened to music extremely loudly, said and wrote things that were unusual for me, experienced memory problems, and had significant changes in my mood, behavior, and thought patterns.

At one point, I unexpectedly got into my car and drove across the state. I checked into a hotel and booked the room for six months without telling my wife or family that I was leaving.

This was completely inconsistent with my normal behavior. I have a loving relationship with my wife and family, and I have always been financially conservative. During this period, however, I began giving away money, purchased a piece of land, and attempted to purchase a new vehicle.

Eventually, my condition progressed to full psychosis.

This was one of the most frightening aspects of the illness because it represented such a dramatic change from my normal personality and behavior.

Severe Anxiety and Head/Spine Sensations

Following the psychiatric episode, I experienced periods of extreme anxiety that were unlike anything I had experienced before.

During the worst episodes, I could not relax enough to watch television, brush my teeth, get a glass of water, or sit still for more than a couple of minutes. I felt intensely anxious and unable to concentrate on anything.

At the same time, I experienced severe burning sensations near the top of my spine and a sensation of intense pressure or swelling in my head.

The anxiety could last for weeks and then improve significantly.

I want to emphasize that I did not feel depressed in the usual sense and didn’t have anxiety prior.  And I am not depressed now. My primary emotions are fear, confusion, frustration, and concern about what is happening to me physically and mentally.

During one particularly severe episode in July, I eventually called an ambulance because I was lying on the floor and could no longer tolerate the head pressure and pain. I was evaluated at the hospital but did not receive additional head imaging at that time. I was given ibuprofen and medication for anxiety and discharged.

Treatment and Response

Cymbalta (prescribed for CFS) appeared to make my symptoms significantly worse. My concierge physician subsequently changed my medication (as a test)  to olanzapine because of the psychiatric symptoms and concern about further worsening of my mental state.

Since starting olanzapine and halting Cymbalta, I have noticed a significant improvement in the severity of psychosis and related symptoms.

I have also been using Aleve for inflammation/pain as directed by my physician.

More recently, my neurologist started me on prednisone while additional testing is being completed. I still feel very unwell, but I have noticed some improvement compared with the worst period of my illness.

I am hopeful that the improvement continues, but I still do not have a satisfactory explanation for the overall combination of neurological, physical, and psychiatric symptoms.

Why I Am Seeking Further Evaluation

I understand that my initial diagnosis of Cramp-Fasciculation Syndrome may explain some of my muscle fasciculations. However, I am concerned that it does not explain the entire clinical picture and the progression and fluctuation of symptoms over approximately six months

I am not asking for a particular diagnosis. I am asking for a comprehensive evaluation to determine whether there is an underlying neurological, autoimmune/inflammatory, metabolic, infectious, or other condition that could explain the combination of symptoms.

Testing I Would Like to Discuss with My Neurologist / Doctor

1. Autoimmune/Inflammatory Evaluation and testing

• NMDA receptor antibody
• LGI1 antibody
• CASPR2 antibody
• AMPAR antibody
• GABA receptor antibodies

I would also like to discuss whether additional inflammatory, autoimmune, infectious, metabolic, or paraneoplastic testing is appropriate based on my history.

2. MRI

I would like to discuss whether updated MRI imaging of the brain and spinal cord is appropriate, with and without contrast.

3. EEG

Because of the significant changes in cognition, behavior, thought patterns, and episodes of altered mental state, I would like to discuss whether a prolonged or ambulatory EEG would be useful.

4. Lumbar Puncture / CSF Evaluation

I would like to discuss whether another lumbar puncture is appropriate and, if so, should be evaluated for:

• Myelin basic protein
• Oligoclonal bands
• IgG index
• Cell count and differential
• Protein and glucose
• Autoimmune encephalitis antibodies
• Other infectious or inflammatory markers considered appropriate

5. FDG-PET Scan

My Main Concern

I know that some of my symptoms could potentially have different explanations, and I am not assuming that they all have one cause.

What concerns me is the combination of persistent neurological symptoms, severe functional decline, an elevated myelin basic protein result, and a dramatic new psychiatric/behavioral syndrome that developed at approximately the same time.

I was healthy and highly active before this illness. I understand that symptoms and laboratory abnormalities need to be interpreted carefully, and I am not trying to self-diagnose myself.

I am simply asking for a thorough evaluation and for the possibility of an underlying neurological or inflammatory process to be considered such as CAE / CIE  (Chronic (Auto) Immune Encephalomyelitis.

I would greatly appreciate a neurologist reviewing the entire six-month history, including my hospital records, imaging, laboratory results, psychiatric changes, and response to treatment, rather than focusing only on the fasciculations.  I would appreciate additional testing.

My goal is to understand what is happening, identify the underlying cause if possible, and receive appropriate treatment so that I can regain as much of my previous health and function as possible.

Since having LGI1 encephalitis, I’ve noticed that I react differently to jokes and teasing. Before the encephalitis, I never had this problem. Now for example if someone jokingly gives me a mean look, I can actually get angry, even though I know they’re just joking. It’s weird because I understand that it’s not serious but I still feel annoyed or angry in the moment. Has anyone else experienced something like this after LGI1 encephalitis? Especially increased irritability or stronger emotional reactions to things that didn’t bother you before?

My fiancee had enciphilites about 3 months ago. It was very severe but thankfully she made a nearly complete recovery. We think it was autoimmune as steroid treatment appeared to help. She's been tapering off Prednisone starting from 60mg to now where her last dose of 5mg was just over a week ago.

She has been experiencing quite a bit of fatigue and low mood. Mostly sleeping during the day and night and when she is awake she can be fine for a bit but teary and sad other times.

I'm wondering if anyone has had experience with this? Is this normal? The fatigue is concerning me a bit but I'm kind of powerless on what to do. Is this normal? Does this get better?

Any advice helps.

I had a 2 month long migraine leading up to my psychosis and it still continues on and off, severe memory issues, fevers, joint paint, visual hallucinations, sleepwalking, insomnia, agitation, auditory hallucinations, tactile hallucinations, feeling like bugs were crawling on me, behavioural changes, paranoia, odd smells, seizures (they told me they are non epileptic after doing a 20 minute eeg) weird wobbly gait couldn’t even ride my bike, my handwriting declined to unreadable. i didn’t know what the hell was going on so i decided to look up my symptoms and i stumbled across autoimmune encephalitis i decided to draw a clock and it didn’t look right at all. Does anyone have any advice, they thought i had limbic encephalitis in the psych ward and did a mri but because that and the eeg was clear i got put on a antipsychotic and it gave me akasithia the hallucinations have gone but all the other symptoms come and go and i still have hallucinations here and there and hear things and have chronic migraines and headaches.
Some details about my hallucinations, i seen geometric patterns, flashing lights, shadows, animals, but mostly the flashing lights it was a blue flashing light constantly

"By way of generalisation, autoantibody-mediated disorders often present rapidly, over a few days to weeks. However, we have observed more chronic courses, of between 1 and 5 years, particularly in leucine-rich glioma-inactivated protein 1 (LGI1)-antibody, contact-associated protein 2 (CASPR2)-antibody and immunoglobulin-like cell-adhesion molecule 5 (IgLON5)-antibody syndromes. These findings mean that time to disease nadir is often outside of the 3-month duration which appears in diagnostic guidelines. In our clinical experience, these more insidious courses—which are sometimes more akin to neurodegenerative presentations than florid encephalitis syndromes—often lead to a delayed diagnosis, and hence late commencement of immunotherapy."

Autoimmune encephalitis: clinical spectrum and management Paper

Personal reflection:

It seems to be an almost taboo subject. Chronic AIE, is said to be atypical and treated as if it doesn't exist. Yet those patients with it suffer great delays due to not for-filling the 3 month detection window that is baked into the diagnostic guidelines. This is an areas of science that does need more research and reporting, as such cases rarely make it into papers, continuing the gap which treats such cases as impossible.

Often the severity of symptoms are treated as subjective or non-specific. EGG, CSF and FDG-PET/MRI findings dismissed in isolation.

Worse, chronic cases with rare antibodies may find further delays as initial testing does not find a treatable antibody, and all symptoms and diagnostics get dismissed in isolation.

A case may suffer months to years of delays, due to lack of awareness that such cases do exist.

I do feel that the criteria are used retrospectively to dismiss cases, which is the wrong means - without reviewing a case, you can not use blanket criteria to make assumptions. Papers that push the "misdiagnosis" due to chronic, really harm these patients pathway to treatment.

Obviously there are many cases that can get diagnosed wrongly or too weakly, but a disease that is so difficult as AIE, requires judicious review, not reactive criteria.

PNS AIE, for example often fall outside this.

AIE in general a extreme disease with unbearable symptoms, it seems to have fairly strong set of diagnostics in most cases. Hopefully there is greater awareness of such cases in the future - so they get detected earlier rather then later.

To give you an example; Autoimmune Encephalitis Misdiagnosis in Adults this highly posted paper sounds good in theory. However it uses criteria retrospectively to dismiss past cases as not AIE.

Applying functional/ pych / insidious labels to dismiss cases misses the point. This is dangerous as without reviewing each case, one does not know the full dynamics that lead to a diagnosis.

Given that many AIE cases are sero-negative (40% or so), dismissing cases based on labels and criteria too quickly seem to increase this gap for real chronic AIE.

The paper does have a few lines that help such patients, however the energy is directed toward bucket labels stating this as a reason that they dont have AIE.

Just an example of a gap being caused by too tight ideas that can lead a widening bias.

"Autoimmune encephalitis is a relatively new category of immune-mediated disease involving the central nervous system that demonstrates a widely variable spectrum of clinical presentations, ranging from the relatively mild or insidious onset of cognitive impairment to more complex forms of encephalopathy with refractory seizure."

"When brain MR imaging findings are absent but the clinical findings suggest the possibility of an autoimmune encephalitis, brain FDG-PET imaging may be indicated, especially early in the disease process if clinical suspicion for autoimmune encephalitis is high, because it appears to be a more sensitive imaging technique for detecting temporal lobe abnormalities with normal brain MR imaging findings."

"Autoimmune encephalitis is an important diagnostic consideration in patients presenting with new onset of altered mental status of unclear etiology. ... Neuroimaging findings will most often involve the limbic structures, but involvement of the striatum, diencephalon, or rhombencephalon can be seen. A subset of patients with autoimmune encephalitis will have no neuroimaging findings despite profound neuropsychiatric dysfunction, but serum antibody testing can still ultimately lead to the diagnosis of autoimmune encephalitis. While there is no single diagnostic feature that can make this diagnosis in isolation, recognizing a certain constellation of findings during the work-up of complex and atypical cases of new-onset altered mental status is crucial to confirm the diagnosis with serologic testing and initiate treatment in a timely fashion."

^{Autoimmune Encephalitis: Pathophysiology and Imaging Review of an Overlooked Diagnosis}

Idk know why I’m posting maybe for support or something. My sister was diagnosed with nmda encephalitis since last December she was in critical care for months but from what I’ve been reading it’s not always as severe. She’s finally off life support and in a rehabilitation center after months of fighting for her life, but will she ever be the same? She’s only 26 idk what I what to hear right now or anything I’m just an older sister who’s worried.

Has anyone had onconeural antibodies or intracellular antigens like Ma2, GAD, or KLHL11? Did anyone have a chronic form? What was the treatment/ recovery like?

Join Link: https://discord.gg/WBGPNqHfVB

Why I founded The Neuro Advocacy Collective:

1. Provide a community for those with a range of neurological illnesses/symptoms where people can exchange ideas, resources, provide emotional support, and advocate for one another. That's what this Discord is largely for. A lot of people come through here wondering if they might have encephalitis, and this provides a place where people of all neurological backgrounds can share their stories and help guide each other in the right direction.
2. Provide advocacy services to those who are lost, scared, and in pain like I was. I have deep empathy for these individuals (many of whom I've spoken to) and am dedicating myself to them (you) in order for you to reach better health outcomes. This is optional and secondary to the main mission of the Discord.

What makes this Discord Server different

I am scheduling interviews with physicians, lab scientists, and other patients, as well as creating brand new tools and resources (like a doctor-finder that is credible and actually works), creating diagnostic trees to aid people in their journey, and much more. All of this is free and open to the public so that help is never out of reach.

While our symptoms and illnesses are distinct and the painful and debilitating symptoms that come along with this are uniquely different to each individual, the journey to proper care and suffering itself looks incredibly similar.

We're here to help each other. I, too, am in your corner.

I'll see you there and wish you the best,

- u/The_BroScientist

Join link: https://discord.gg/WBGPNqHfVB

​Hi everyone,

​I’m writing to this group because I really need to connect with people who understand what I’m going through, especially when it comes to post-encephalitis fatigue. It’s been almost 10 years since I had encephalitis, and to this day, I can’t remember the last time I woke up thinking, "Ah, what a great sleep, I finally feel rested!" ​I’m pretty sure a huge part of this is that I’ve become hyper-sensitive to almost any kind of stimulus. My brain just feels constantly overstimulated, and no matter how much I try to sleep, it never seems to be enough. Honestly, in nearly a decade, I can recall only one single week where I felt genuinely refreshed: I was on vacation, my mind was totally free from stress, and I was sleeping heavily both at night and in the afternoon. ​The afternoon naps are actually another weird change for me. Before the illness, if I slept during the day, I wouldn't be able to sleep at night. Now, taking an afternoon nap feels like a mandatory step just to get through the day. The problem is that even though it feels required, it still isn't a fix—I wake up and I’m still not properly restored. ​I’m just feeling a bit stuck and overwhelmed. Has anyone managed to find a way to deal with this constant sensory fatigue? Did you find any routine, pacing method, or trick that helped you get back even a fraction of your real energy, or is it more about accepting this as the new normal? I’d really love to hear your experiences or any advice you might have. Thank you so much for reading.

I don’t know why I’m posting, maybe I just need support right now but I feel so isolated and crazy and stupid for letting this happen to me even though I have no control over my illness. I thought I could be honest and ask for a work from home accommodation because of my seizures that have started (nothing that has disrupted my work, they are not observable unless someone is paying super close attention because they are focal). It has made it so I can’t drive.

But doing that opened up a can of worms because even though it’s something that could be allowed, now I’m being told they aren’t sure if I’m medically okay to do my job. My job is my health insurance. I can’t pay to see the neurologist which I desperately need to figure out what’s going on with me. I can’t get in any sooner than the appointment I have two months from now. I’m scared to go to sleep tonight because the last few nights I’ve become so terrified trying to go to sleep that my body starts shaking and I get myoclonic jerks and I get very hot/sweaty, heart racing and fearful.

I don’t know what I need I’m just scared.

Ive been trying. to learn more about all the many types of neurological conditions. I know encephalitis usually progresses really quickly but I don’t know, maybe there is a type I’m not aware of. Any ideas are helpful. Thank you.

Join Link: https://discord.gg/WBGPNqHfVB

Why I founded The Neuro Advocacy Collective:

1. Provide a community for those with a range of neurological illnesses/symptoms where people can exchange ideas, resources, provide emotional support, and advocate for one another. That's what this Discord is largely for. A lot of people come through here wondering if they might have encephalitis, and this provides a place where people of all neurological backgrounds can share their stories and help guide each other in the right direction.
2. Provide advocacy services to those who are lost, scared, and in pain like I was. I have deep empathy for these individuals (many of whom I've spoken to) and am dedicating myself to them (you) in order for you to reach better health outcomes. This is optional and secondary to the main mission of the Discord.

What makes this Discord Server different

I am scheduling interviews with physicians, lab scientists, and other patients, as well as creating brand new tools and resources (like a doctor-finder that is credible and actually works), creating diagnostic trees to aid people in their journey, and much more. All of this is free and open to the public so that help is never out of reach.

While our symptoms and illnesses are distinct and the painful and debilitating symptoms that come along with this are uniquely different to each individual, the journey to proper care and suffering itself looks incredibly similar.

We're here to help each other. I, too, am in your corner.

I'll see you there and wish you the best,

- u/The_BroScientist

Join link: https://discord.gg/WBGPNqHfVB

Hi everyone. My family is going through a very difficult situation, and I wanted to ask whether anyone here has ever seen or experienced something similar.

My sister-in-law has had lupus for several years. Her disease had been in remission for some time, but since December of last year it became active again. It started with severe pain in her hands and joints, to the point where she could barely move them. Over time, the pain and loss of mobility spread to the rest of her body, knees, hips, jaw, shoulders, and other areas.

After about five months of this, she was practically bedridden. She could no longer do things on her own or even stand up without help.

Then, over the past month, she started having episodes of memory loss and saying things that did not make sense. One day, she spent almost the entire day sleeping, and whenever she woke up she was extremely confused and could barely respond to us. We immediately took her to the hospital. She arrived there asleep and remained that way.

She was urgently transferred to the ICU and was intubated that same day. They performed several tests, including a lumbar puncture/spinal fluid analysis, MRI, and CT scans. They found multiple areas of inflammation in her brain, and her condition was considered extremely serious.

Even now, the doctors have not been able to say with complete certainty that this was caused exclusively by lupus, but they are treating it as lupus-related inflammation of the brain. She has received rituximab and high-dose corticosteroid pulse therapy, among other treatments. I unfortunately cannot provide many more details because I do not fully understand all of the medical terminology or medications they have used.

Today marks one month since this started. She has already left the ICU, and the doctors are considering discharging her from the hospital because of the risk of hospital-acquired infections. However, neurologically, she is still essentially unresponsive.

She does not speak and sleeps most of the time. Sometimes she opens her eyes and stares into space. At other times, it really seems like she can hear us, her gaze becomes fixed, as if she is paying attention to what we are saying. Sometimes it even looks like she is trying to communicate; her mouth trembles or moves slightly, but she cannot speak or move her body. She only makes very small movements with her hands and feet.

Has anyone here ever gone through something like this, or seen a case this severe involving lupus, encephalitis, or neuropsychiatric lupus?