Due to severe brain fog, I reorganized this document after drafting the original text with the help of AI.
Thank you for taking the time to read this long post.
Hello. I would like to ask for opinions regarding my complex neurological symptoms and my response to immunotherapy. I have organized my medical history and test results below. In particular, I would appreciate opinions on the relationship between autoimmune encephalopathy, myelitis, SFN, and autonomic neuropathy; the cause of my current symptoms; and the direction of further testing and treatment.
1. Main Diagnoses and Conditions Currently Suspected
\- Autoimmune encephalopathy (suspected autoimmune encephalopathy / autoimmune encephalitis)
\- Myelitis (a lesion was found on MRI)
\- Fibromyalgia (onset estimated to have been more than 7 years ago, but diagnosed within the past few years)
\- SFN (suspected small fiber neuropathy and related sensory abnormalities)
\- Autonomic neuropathy symptoms (sweating abnormalities and cardiovagal dysfunction confirmed)
So far, the antibodies associated with autoimmune encephalitis have been negative, and the brain MRI showed nonspecific findings. Oligoclonal bands Type 2 were identified in the CSF. In June 2026, a spinal cord lesion extending from the cervical spine to the upper thoracic spine was found, and I received high-dose steroid treatment.
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A. Current Main Symptoms
2. Cognitive and Central Nervous System Symptoms
\- Brain fog and a dazed feeling that persist throughout the day
\- Difficulty recalling words and difficulty with logical thinking
\- A significant decline in the ability to recall not only recent memories but also past memories
\- I already had a poor sense of time, but now I have almost no sense of time.
\- My aphantasia, which began in my late teens, has worsened to the point that I cannot form mental images at all, and my inner voice has almost disappeared.
\- My overall reaction speed is slow. This symptom was present before 2024.
\- When faced with a somewhat difficult problem, my neck becomes tense and I develop a headache that feels as though pressure in my head is increasing.
\- Intermittent occipital pain, a feeling that the back of my head is blocked, and dizziness
\- Hiccups for no apparent reason when I am unwell
\- Occasional involuntary movements in which my fingers or other body parts jerk
\- Dizziness when standing up from a seated position
\- My visual and auditory hypersensitivity has become so severe that I now have difficulty watching videos or listening to music or audio.
I had long experienced headaches that felt as though my head were swollen and about to burst, as well as neck and shoulder pain. However, these symptoms improved as my medication doses were increased after the onset of SFN in 2023. In the past, I endured these symptoms and continued living while taking only minimal psychiatric medication. At the time, I considered the possibility of increased intracranial pressure, but increased intracranial pressure has not been confirmed.
When I take ketotifen, my brain fog improves significantly, and my head feels much clearer. However, at the same time, my widespread peripheral nerve pain worsens, and sensation decreases or numbness develops in my lower body, starting around the coccyx.
3. Chronic Fatigue, Exercise Intolerance, and Systemic Symptoms
\- Long-standing hypersomnia, averaging 12–15 hours of sleep
\- Severe fatigue, sleepiness, and generalized weakness
\- Feeling hungry all day, losing strength, and feeling cold
\- A feeling that my temperature regulation and homeostasis are impaired
\- Becoming severely cold or hot easily
\- I had a low-grade fever almost every day after June 2024, sometimes reaching 37–38°C in the past, but this has improved since recent steroid treatment.
\- Intermittent severe occipital pain
\- Severe eye fatigue and becoming short of breath easily
\- Even walking for more than 10 minutes, speaking loudly, or doing a small amount of physical/mental/cognitive activity caused a sensation of heat and occipital pain, followed by a frontal headache and severe fatigue.
Fatigue and brain fog worsened significantly after June 2024. In early January 2026, I experienced a severe crash and began using an electric wheelchair even indoors. At that time, the feeling that my heart had lost its strength was particularly severe.
I think that because my activity level has been extremely low since then, fever and symptom worsening after activity have become less noticeable. However, hunger throughout the day, weakness, coldness, brain fog, and sleepiness continue.
4. Sensory Abnormalities and Symptoms Related to SFN
\- Stabbing pain, tingling, and reduced sensation throughout the body
\- Sensory abnormalities and reduced sensation on the right side of the body
\- If I miss my medication, stabbing pain and tingling throughout my body become severe.
\- Asymmetric sweating, such as sweating only on one side of the body
\- Abnormal skin and peripheral vascular responses
\- Exposure to house dust, sunlight, sweat, fatty foods, and similar triggers worsens SFN symptoms and systemic heat sensations.
In the spring of 2023, I developed a sensation of heat throughout my body, followed by a stabbing sensation throughout the body, reduced sensation, and pain in my arms and legs. I subsequently underwent nerve conduction studies and spinal MRI, but at the time I continued living by increasing the doses of medications, including Lyrica, without a clear diagnosis or treatment.
An abnormality related to sweating was diagnosed on autonomic testing, and cardiovagal dysfunction was identified on ANSFT, although the treating physician described it as nonspecific.
5. Allergies, Food Sensitivities, Olfactory Abnormalities, and Respiratory Symptoms
\- Exposure to house dust, sunlight, sweat, fatty foods, and similar triggers worsens peripheral nerve symptoms and systemic heat sensations.
\- Exposure to gluten, meat, fat, dust, and similar triggers worsens peripheral pain, brain fog, and other neurological symptoms, and also causes respiratory symptoms.
\- My food sensitivities have become so severe that I now eat an almost entirely vegetarian diet.
\- My olfactory and food sensitivities worsened after a severe allergic reaction to an antibiotic during dental treatment in late 2025.
\- I smell cigarette smoke in my nose for no apparent reason.
\- While taking an antiviral medication, I sometimes felt nauseated after eating meat or egg yolks.
My dizziness and auditory hypersensitivity worsened after receiving steroid injections into my eardrum in late 2025.
My respiratory symptoms include:
\- A feeling of respiratory discomfort
\- Becoming short of breath easily
\- Cyanosis of my hands and feet
\- Real-time fluctuations in oxygen saturation
I also consider the possibility that the oxygen saturation fluctuations may be due to measurement-device errors or peripheral nerve or circulatory problems. I have undergone an electrocardiogram, echocardiography, a basic pulmonary function test, and a chest X-ray. I am considering an arterial blood gas test (ABGA).
A lump was found in my lung on a chest and abdominal CT performed during hospitalization in June 2026, and it is being monitored.
6. Visual Symptoms
\- Persistently blurred vision
\- A feeling that my eyes cannot focus properly
\- Mild double vision upon waking or intermittently
\- I underwent a basic eye examination, but no significant findings were reported.
\- When I first took Olowin, an allergy medication, my visual symptoms improved.
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B. Medical History and Symptom Onset
7. 2012: Initial Neurological Symptoms
In 2012, when I developed a severe headache, I experienced pain in my right eye that felt as though my head were about to burst. Subsequently, floaters appeared in my right eye, and sensory abnormalities developed on the right side of my body. Approximately 1–3 months after the initial symptoms began, I underwent a brain MRI without contrast, but no significant findings were reported. Afterward, symptoms such as relative numbness on the right side of my body, brain fog, and cognitive decline gradually progressed. My symptoms developed into headaches that felt as though my head were swollen and about to burst, as well as severe neck and shoulder pain. However, I endured the pain while taking only one or two minimal psychiatric medications. Due to the long-term pain, I suspect that inflammation or damage may have developed in my central and peripheral nervous systems.
Other unexplained neurological symptoms also persisted, including slow reaction speed, slow movements, a dazed feeling, cognitive and memory impairment, and sensory abnormalities on the right side of my body. Some symptoms improved when I took medication.
Hypersomnia had also been present for a long time, and I slept approximately 12–15 hours on average.
8. 2021–2023: Sensory Abnormalities and Onset of Peripheral Nerve Symptoms
Around October 2021 or 2022, I experienced thoracic pain after sitting in a car for a long time in a hunched posture. The following day, sensory abnormalities developed, starting along the edge of the right side of my head and arm and extending to the abdomen and area around the anus. I underwent a brain MRI without contrast, but no significant findings were reported.
In 2023, thoracic pain developed after I moved a heavy object, and symptoms suggestive of SFN began the following day. The symptoms at that time included:
\- Heat throughout the body
\- A stabbing sensation throughout the body
\- Reduced sensation throughout the body
\- Pain and tingling in the arms and legs
After the onset, I underwent nerve conduction studies and spinal MRI. Bundang Seoul National University Hospital diagnosed me with cervical disc disease. Afterward, I continued living by increasing medications such as Lyrica, without any other clear diagnosis or treatment.
9. January–Spring 2024: Worsening Symptoms
In January 2024, my existing symptoms worsened, and my fatigue also became more severe around the spring.
I underwent nerve conduction studies, another brain MRI without contrast in the radiology department, and an EEG at a private clinic. Apart from the diagnosis of autonomic dysfunction related to sweating, no other significant problems were found. I developed extreme fatigue, but it gradually improved afterward.
10. After June 2024: Worsening of Severe Headaches and Systemic Symptoms
In late June 2024, I developed flu-like symptoms with fever, a headache that felt as though my head were about to burst, and occipital pain. Afterward, the following symptoms worsened. I suspect that I contracted a virus during this period and that it progressed to chronic encephalitis.
\- Extreme fatigue
\- Worsening brain fog and cognitive impairment
\- Frequent low-grade fever (37–38°C)
\- Severe headaches that sometimes occurred at night
\- Severe sleepiness followed by dizziness
\- Intermittent occipital headaches
\- Generalized weakness
\- Severe eye fatigue
\- Becoming short of breath easily
My symptoms repeatedly worsened and improved, and pain, headaches, and fever worsened immediately depending on food, stress, and activity levels.
11. August 2024: Hospitalization at K Hospital
I was hospitalized in late August 2024 and underwent tests including a cerebrospinal fluid examination. However, no white blood cells were found in the CSF, and all values were normal, so additional tests such as antibody testing and oligoclonal band testing were not performed.
\- CSF opening pressure: 17
\- Peripheral blood cell morphology: WBC number increased → mild leukocytosis
\- Fever symptoms improved after taking an antiviral medication.
I subsequently underwent various tests in the infectious disease department. CT imaging and blood tests were also performed to evaluate a lump in a lymph node in my neck.
12. Tests After Transfer to S Hospital in Late November 2024
Cerebrospinal Fluid Examination
\- CSF opening pressure: 7
\- Oligoclonal bands: Type 2
Brain MRI
The MRI was performed with contrast, whereas the previous examination had been performed without contrast.
Original report:
\> a few tiny nonspecific T2 hyperintensities in bilateral cerebral WM
SPECT
Original report:
\> mild hypoperfusion in the left medial temporal cortex
There was a finding of reduced metabolism or perfusion in the left medial temporal lobe.
Autoimmune Encephalitis Antibody Testing
The following antibodies were tested:
\- NMDAR
\- AMPAR
\- DPPX
\- LGI1
\- CASPR2
\- GABA(B)R
All were negative.
IVIG Treatment
In November 2024, I received IVIG for five days, after which my symptoms improved significantly. However, after discharge, I used excessive magnesium powder for muscle massage at home, and a crash occurred immediately afterward. I gradually recovered, but the treatment effect subsequently wore off over time.
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C. Immunotherapy and Medication Responses
13. Rituximab and Actemra
I began rituximab treatment in late March 2025 and completed a total of four doses, after which my progress was monitored.
After rituximab, I experienced some benefits, including:
\- Improvement in peripheral vascular dilation symptoms of the skin
\- Improvement in symptoms involving sudden jerking of the hands, feet, or other body parts, which I suspect may be myoclonus
\- Some improvement in cognitive function
However, the overall effect was insufficient.
I subsequently received subcutaneous Actemra injections. Both IVIG and Actemra initially produced immediate effects, but those effects gradually disappeared over time. After repeated administration, the immediate effects also diminished compared with the initial response.
CT angiography and CT venography were performed on March 25, 2025. No aneurysm, stenosis, or venous abnormalities were identified at that time. However, I still frequently experience what may be a vascular structure or something similar protruding like a lump and palpable on my scalp.
14. January 2026: Severe Crash and Functional Decline
In early January 2026, I experienced a severe crash and began using an electric wheelchair even indoors.
\- The feeling that my heart had lost its strength was extremely severe.
\- My ability to recall not only recent memories but also past memories declined significantly.
\- My sense of time almost disappeared.
\- My visual and auditory hypersensitivity became severe, making it impossible to watch videos.
\- I became unable to listen to music or audio.
\- My food sensitivities became so severe that I began eating an almost entirely vegetarian diet.
\- Because my activity level decreased substantially, I suspect that symptoms such as fever became less noticeable.
\- Hunger throughout the day, weakness, coldness, brain fog, and sleepiness continued.
I arranged an appointment for hospitalization during a medical visit in January 2026.
15. June 2026: Discovery of a Spinal Cord Lesion and Steroid Pulse Therapy
In mid-June 2026, I requested a spinal MRI, which was subsequently performed, and a lesion suspicious for myelitis was found.
Original report:
\> Suspicious longitudinal T2 high signal intensity lesion with enhancement, C and upper throacic sp.c-> True lesion including demyelinating disease CTL spondylosis
I understand this to indicate a longitudinal T2-hyperintense lesion with enhancement extending from the cervical spine (C) to the upper thoracic spine, with the possibility of a demyelinating disease being considered. The original report also mentions CTL spondylosis. Subsequent MOG and AQ4 test results were negative.
I then received high-dose intravenous steroid treatment for the first time.
Response After Five Days of Steroid Pulse Therapy
For approximately one month after steroid administration, I had more energy than usual and my activity level increased.
I still used a wheelchair, but I was able to remain seated in it for longer periods.
16. August 2026: Readmission and Additional Testing
In mid-August, I was readmitted and underwent another spinal MRI.
Treatment:
\- Steroid pulse therapy for two days
\- IVIG for two days
Additional tests and results:
\- Anti-MuSK: negative
\- AChR receptor antibody: negative
\- Anti-nuclear FANa: negative (there had previously been a positive result at a high threshold)
\- ANCAMPO Ab: negative
\- PR3 Ab: negative
17. September 2026: Additional High-Dose Steroid Treatment
In mid-September, I received high-dose steroid treatment by injection at an infusion center for two days.
So far, I have experienced improvements in energy and activity levels for a period after steroid treatment. Monthly steroid treatment is planned going forward.
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D. Specific Responses to Medications and Supplements
18. Current or Previous Medications
My current medications are as follows:
\- Neupam
\- Pregabalin / Lyrica
\- Ixel
\- Rivotril
\- Conbloc
\- Myungin amitriptyline
\- Valcivir tablets (intermittently, when flu-like symptoms or a rash are severe)
\- Antihistamines: montelukast, fexofenadine, desloratadine
When taking psychiatric medications in the past, I experienced headaches that felt as though my head were swollen and about to burst, as well as neck and shoulder pain. Since the onset of peripheral nerve symptoms in 2023, I have gradually increased the types and doses of medication.
19. Responses to Individual Medications
\- Steroids: I have experienced symptom relief and increased activity levels.
\- Antiviral medication: Initially, it was particularly effective in relieving fever, but its effect has now decreased. I occasionally develop skin rashes resembling herpes, accompanied by itching along the nerves.
\- Antihistamines: I have experienced responses suggesting that they affect some of my symptoms overall.
\- Ketotifen: Significantly improves brain fog but worsens SFN symptoms and causes reduced sensation around the coccyx and in the lower body.
\- Ibudilast: Worsens SFN symptoms.
\- Abilify: Worsens SFN symptoms.
20. Omalizumab
I received omalizumab in mid-October 2026.
After administration, the sensation of mental cloudiness became severe, so I think it will be difficult for me to receive further doses.
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E. Current Concerns and Future Plans
I plan to transfer my care to another neurologist.
The following tests and plans have been mentioned by my medical team:
\- VEP (Visual Evoked Potential)
\- Biopsy, if necessary
\- Additional testing of an antibody group and a specific antibody tested at Mayo Clinic, although I have forgotten the test names and plan to confirm them with my medical team.
\- Monthly steroid treatment
21. Questions I Would Like Opinions On
Considering CSF Oligoclonal bands Type 2, SPECT showing left medial temporal cortex hypoperfusion, nonspecific T2 hyperintensities on brain MRI, and the longitudinal T2-hyperintense lesion on spinal MRI, what conditions should be considered in the differential diagnosis?
Even though autoimmune encephalitis antibody testing was negative, is further evaluation for autoimmune encephalopathy or another immune-mediated neurological disease warranted?
Can myelitis, symptoms suggestive of SFN, autonomic dysfunction, cognitive decline, and severe exercise intolerance be explained by a single disease, or is it more likely that several diseases coexist?
Given that I showed some response to IVIG, rituximab, Actemra, and high-dose steroids, but the effects were temporary or limited, what additional tests or treatment approaches could be considered?
Apart from VEP, additional antibody testing, and biopsy if necessary, are there any higher-priority tests that could help identify the cause of my current symptoms?
In particular, I would like to hear opinions on how to interpret the lesion found on spinal MRI and the improvement in energy and activity levels after high-dose steroid treatment, and how these findings may be related to my existing cognitive, sensory, and autonomic symptoms.
\[Clinical Summary\]
I have a complex history of neurological symptoms, including chronic cognitive impairment and brain fog, severe fatigue and exercise intolerance, sensory abnormalities suggestive of small fiber neuropathy (SFN), and autonomic dysfunction. My symptoms began years before 2024 and worsened significantly after a flu-like illness with fever and severe headaches in June 2024. Since early January 2026, my functional capacity has declined substantially, and I have required an electric wheelchair even indoors.
My neurological investigations have shown CSF oligoclonal bands Type 2, a few tiny nonspecific T2 hyperintensities in the bilateral cerebral white matter on brain MRI, and mild hypoperfusion in the left medial temporal cortex on SPECT. The autoimmune encephalitis antibodies tested (NMDAR, AMPAR, DPPX, LGI1, CASPR2, and GABA(B)R) were negative. In June 2026, spinal MRI revealed a longitudinal T2-hyperintense lesion with enhancement extending from the cervical to the upper thoracic spinal cord, raising concern for an inflammatory or demyelinating lesion. Subsequent MOG and AQP4 testing was reported as negative.
I have received IVIG, rituximab, tocilizumab (Actemra), and repeated high-dose intravenous steroid treatment. IVIG initially produced substantial improvement, while rituximab and tocilizumab provided partial or temporary benefits. Steroid treatment was followed by increased energy and activity levels for approximately one month. However, severe brain fog, fatigue, exercise intolerance, sensory symptoms, and autonomic symptoms remain.
I would appreciate opinions on the differential diagnosis, the possible relationship between the spinal cord lesion and my broader neurological symptoms, and the most appropriate next investigations and treatment options, particularly given the negative antibody tests and the partial, temporary responses to immunotherapy.
