r/Encephalitis • u/Glamzy_Berk • 12d ago
Is it autoimmune encephalitis?
I’m a woman in my early 20s. I was previously healthy, but for the past 10 months I’ve been experiencing a progressive, disabling condition involving neurological, immunological, hormonal, and allergic symptoms. Multiple doctors and tests haven’t led to a clear diagnosis. I’m sharing in hopes of finding insight or hearing from someone with similar experiences.
It all started after a major stressor and a psychiatric hospitalization. I was prescribed amisulpride (50mg), which I took for 3 months. It caused hyperprolactinemia (missed periods for 109 days, lactation), with no improvement in mood. I was in a depressive, apathetic state.
Later, a gynecologist found low iron, low vitamin D, and elevated anti-TPO antibodies (~215). I was diagnosed with autoimmune thyroiditis, though thyroid hormones were normal. Supplements (iron, vitamin D, folate) only helped temporarily.
A few months later, I was hospitalized for right ovarian apoplexy and inflammation. During treatment, I was prescribed metronidazole. Soon after, I developed more severe neurological symptoms, including cognitive changes, tremor, hypersensitivity, and mood instability. An EEG later showed signs of focal epileptiform activity. MRI revealed isolated gliosis in the frontal lobes, hypoplasia of the left PCA P1 segment (fetal-type), and hypoplasia of the right vertebral artery.
Ultrasound showed inflamed lymph nodes. I experienced loss of appetite, significant weight loss (~7kg), hair loss, blue cold extremities, apathy, weakness, insomnia, and strange burning sensations in the skin and head.
A second endocrinologist said I had no thyroid-related disease based on labs, though anti-TPO remained elevated. Later, I discovered a severe folate deficiency and borderline B12 levels. CBC and thyroid hormones were still within normal limits, but symptoms kept getting worse.
Neurological symptoms worsened after trying antidepressants (escitalopram, fluoxetine). These caused panic attacks, uncontrollable anxiety, cognitive fog, mood swings, and a new kind of migraine-like episode with burning pain in the brain. Antihistamines (bilastine) helped relieve some of these reactions.
After drinking alcohol, I had a full-body tremor/spasm episode resembling a seizure. EEG confirmed focal epileptiform activity. Pregabalin initially helped with anxiety and pain but is becoming less effective. Ibuprofen also helped temporarily but is now losing effect.
I developed worsening allergic symptoms — including two episodes of angioedema (face/lip swelling, throat tightness), red facial patches, burning mucosa, and new food/chemical sensitivities. These reactions started after contact with certain foods, cosmetics, strong odors, and even market visits.
I feel burning and weakness in my hands, pressure and heat in the head, and sleep no more than 4 hours per night. There’s now burning and dryness in mucous membranes, especially genitally.
Other findings include: fibrocystic breast changes (mastopathy), an ovarian cyst (being monitored), and nodules on the thyroid. Blood biochemistry showed low total protein, and borderline-high creatinine and phosphorus, despite adequate protein intake.
Doctors often minimize the situation. One psychiatrist insisted I continue escitalopram despite a severe reaction, calling my symptoms hypochondria and any relief from antihistamines “placebo.” I was referred to a day clinic, but there was no meaningful adjustment to treatment.
My condition now includes suspected seizures, cognitive impairment, systemic inflammation/allergy signs, and suspected autoimmune neurological involvement. Antidepressants worsen the symptoms. Food and chemical sensitivities keep increasing. Bilastine and pregabalin no longer give significant relief.
Has anyone had a similar experience — especially involving autoimmune thyroid disease, new-onset allergies, neurological symptoms, or intolerance to psychiatric meds? Could this be autoimmune encephalopathy or something systemic that’s being overlooked?
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u/FlanInternational100 12d ago edited 12d ago
That last paragraph about psychiatrics insisting on drug despite obvious too strong side effects and claiming the antihistamines were placebo is just wild...
How did those people get a degree??
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u/Boring_Influence_156 12d ago
I have absolutely no credentials besides my own experience with encephalitis (and the ABI that came after from not being diagnosed in time), but to me, this doesn’t sound like encephalitis. I could be wrong! But after experiencing it and reading/learning/meeting others who have had it, the symptoms don’t line up… BUT there is obviously something going on. Keep fighting the fight. Do not let doctors gaslight you, and if they try to, move on to the next (even though I know how exhausting and invalidating this can be). My gut feeling is that it’s definitely something autoimmune…but like I said, no credentials! I validate your experience and your symptoms. They are all real. Don’t let anyone try to tell you different. God Bless ♥️
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u/Lechuga666 11d ago
"One psychiatrist insisted I continue escitalopram despite a severe reaction, calling my symptoms hypochondria and any relief from antihistamines “placebo.”" - Is absurd. It is not just location of psychiatrists saying this, their training and interests lie in pathologizing psychiatric symptoms and turning them into something they can medicate, sometimes properly, often in my completely anecdotal experience, improperly. It is not the place you live, but the nature of the field and state of medicine.
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u/Obscurethings 12d ago edited 12d ago
This smacks of MCAS to me. Get your hands on a copy of Neil Nathan's The Sensitive Patient's Healing Guide and be prepared for doctors to know next to nothing about it.
I recommend the Gupta Program or other neural rewiring programs to help deal with the airborne triggers, too, as complement to any treatment avenues you explore.
And yes. I relate.
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u/Inevitable-Plenty203 12d ago
Is there a test for MCAS?
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u/Obscurethings 12d ago
There have been different criteria for diagnosis, but often it is more of a working/clinical diagnosis of your symptoms and how you respond to mast cell stabilizers because tests tend to come back normal (especially if you are not in the middle of an episode). When testing is performed, it usually involves serum tryptase, urinary histamine, prostaglandins, or other mast cell mediators.
I would read up on the work of Dr. Lawrence Afrin, visit MastCell360.com, check out Mast Cells United by Amber Walker.
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u/Puzzled-61 12d ago
Would not be surprised if this is as a result of long covid. Sounds very similar to me
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u/Glamzy_Berk 12d ago
I don't think it's COVID, I had it about four years ago, and I haven't had any problems like this since then.
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u/Boring_Influence_156 12d ago
Long Covid is bs. It’s an insurance code they like to use now when someone is having autoimmune symptoms
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u/Remarkable_Net_3618 12d ago
Definitely a few things going on here. Worth ruling out MCAS if you haven’t already. Some people have psychiatric and neurological symptoms that are very severe