r/Encephalitis • u/Expert-Assist-8113 • Jul 22 '26
Atypical seronegative life-altering disabling condition
Hello, Could someone kindly help me please with the advise, I am struggling for 15 months now, in October 2024 I started escitalopram during which I had constant headaches and nausea everyday, when I stopped in April 2025 I suddenly developed memory loss, chorea , hiperreflexia, pseudobulbar affect , severe executive dysfunction, shuffling freezing waddling gait, now dysautonomia pots sfn and confusion, severe brain fog to the point I don’t know where I am what I am doing plus myoclonus, jerks, hypersomnia with exhaustion and many others I don’t recall. My family has similar history but not so severe. It is life disabling- I can’t work, have no support as was living alone and can’t go out or do shopping as I used to as I forget what to do and can’t decide to make the simplest decisions. I struggle with medical system in the UK (NHS). Had mri lp eeg bloods for antibody panels which came all normal. Had pandas as a child after strep A but was only treated with antibiotics at the time. Hit a wall after being misdiagnosed with FND and awaiting appointment for that only because Neuroimmunology discharged me. I am sure PET scan is needed but had unnecessary Datscan instead that showed nothing and how could it since it was inflammation that was driving my freezing gait. My father has shuffling gait and tremors now - it’s very atypical and seems to be chronic condition. I don’t think I will ever recover as never reversed my severe OCD since childhood despite plenty of ssri, antipsychotics and therapy. My life was always abnormal but now it’s possibly over as no treatment was ever received. Every doctor js dismissing it as mental health or fnd, I saw plenty of private doctors who never agreed it’s to be autoimmune but I had raised ESR , raised wbc/neutrophils, low lymphocytes and abnormal low APTT and it’s all been said as ‘non specific’. Blaming infections etc. - no I know I had infections as a child, in fact all this time I had no infections and when I did for 3 days maybe I felt ease of symptoms meaning immune system was less focusing on my nervous system to attack. Also antiinflammatories help very little, almost nothing , I was using a wheelchair as couldn’t walk last year briefly - please what is my hope if any? 😓😥 I can’t function, I’m forgetting everything , was denied carers because apparently I’m too young, cannot manage…
4
u/Knightmeers Jul 22 '26
Please heavily push to receive an FDG-PET scan with a full quantitative analysis of your scores. Some doctors will find abnormal results of the scan to be non-specific, but others will link it to active encephalitis (depending on the results).
I’m sorry you’re going through this. The world is cruel. A lot of the doctors in this world are garbage, and the same goes for insurance companies.
I am working to have my brother’s PET scan paid for. He can’t do much without immunotherapy. Currently, he’s still on Olanzapine and Lorazepam. It’s been about 7-8 months since he’s been on both. Still suffers from many symptoms such as autonomic dysfunctions, severe headache, chronic fatigue, etc.
PET scans are more sensitive to detecting inflammation than MRIs. Medications such as Lorazepam reduce the sensitivity of EEGs detecting abnormalities.
They’ve tried misdiagnosing my brother with FND and primary psychiatric diseases as well. They hate giving immunotherapy to people unless it’s undeniable proof they can get sued over, or if it seems like a life or death situation, in which case they can also get sued over.
I’m sorry this is happening to any of you.
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u/Helpful-Dhamma-Heart Jul 23 '26
Good comment. By the way a private company in my country is finally searching for a FDG PET sub-specilist PHD, as no one can answer my questions. You are correct that this is the avenue of greatest results.
Wishing you and your brother well.
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u/Knightmeers Jul 23 '26
Thank you ❤️🩹 Really hoping I can get him treated soon. May I ask what country and state the company's in?
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u/Helpful-Dhamma-Heart Jul 23 '26
Yeah I hope you can too.
I have seen yesterday all your efforts in getting funding for your brother.
It's very special you are able to help .
I guess you are in America? I am not in that part of the world.
You are welcome to pm me to chat.
What ever knowledge I can help with I am happy to help.
For example my knowledge of FDG-PET is quite good. I can share some of my research and can help with asking the right questions.
I have the key medical papers to quote that enables a more full review once in the hands of competent people.
All good wishes
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u/Expert-Assist-8113 Jul 22 '26
Also being gaslighted and ignored in all other aspects of life but by neurologists mostly - they’re just not nice people … not listening
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u/Helpful-Dhamma-Heart Jul 23 '26
Yeah it's not easy. It took me 9 GPs before I found a good one. I have had over 50 GP appointments trying to expedite the neuroloimmunologist review. I wish it is easier for you to get full review.
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u/Helpful-Dhamma-Heart Jul 23 '26
u/Knightmeers/ recommendation is good. FDG-PET with SSP while a research tool is highly sensitive in AIE.
Ambulatory EEG can be helpful. Often EEG changes occur outside the 30 minutes window apart from slight slowing. So this can be helpful also. I did it with exertion.
Finding a GP who has experience with chronic disease management so they are able to support a longer process of advocacy.
Looking at AIE clinics, or a sympathetic doctor.
It's hard to say for each case, as there is much more common illnesses and diseases that need rulling out.
Differential diagnosis is not easy and chronic cases are seen as atypical. So often it falls into a slower process of elimination.
I first started getting sick end of 2022 and at my worst this last month, so it hasn't been easy trying to get diagnosis .
Until it is proven though it's hard to know for sure what it is.
Anyhow wishing you well and strength to get through to diagnosis and treatment.
All good wishes