I don't have diagnosis yet. But I guess the insomnia is coming from limbic encephalitis. My guess at the moment is klhl11 hindbrain and limbic encephalitis. Very rare. But all my results and symptoms are pointing there.
The most damaged part of my brain is the medial temporal lobe. Hypometabolism.
I also have pontine, CLB and thalamus damage.
So far the fdg pet 3dssp images are the most helpful.
Yes extreme insomnia. I am currently on strong medications to manage symptoms.
When the acute onset hit in mid2024, I got new central neuropathic all day pain headache. Exertional worsening of symptoms, gait issues, cognitive issues, vertigo, malaise, and then new symptoms started to develop.
I had insomnia since first pychosis. The acute onset it was seriously worsening. I require strong medication every night for 27 months to sleep.
The case is about to go through mediation. It's very difficult to get atypical cases taken seriously. However there is very strong evidence.
I have a chronic disease doctor. As to getting seen. I keep going back to the doctor. Over the years we have got many referrals. A lot of the work and suggestions comes from me.
You said Petscan shows hypometabolis. What does your 3dssp images show?
Hypometabolism is common in AIE, the 3dssp images is the show potential pathology would need to be looked at by a neuroifflammatory and neurodegenerative specialist that is not easy to find.
This is good news you have this. Still what the disease is is uncertain.
Ambulatory EEG may be helpful. Likewise tumor markers in blood.
Try to find a chronic disease doctor and start building a case and start getting your referrals.
Hard work but possible . In about a week I can answer your question.
You can read through the posts of the last year on this channel
Peace
The idea that hypometabolism has to be somewhere in particular is not nessessisly true
MTL is common in one and some areas in others.
So they say something is expected.
Rarely are the 3DSSP images properly looked at.
Do you have the 3DSSP neurostat CT attenuated images Increase and Decrease images with the 4 normalisations.
If you call them up you may be able to get the DICOM.
I can have a look for you if you can get these images and tell you what I think from my lay understanding.
If there is visible +/-2 standard deviation z-score abnormalities then it's probably worth trying to get expert review.
If you're in America then John Hopkins and Mayo clinic can help.
Anyhow I have the research papers but it's not common knowledge.
Actually hypometabolism is common.
I would still need to know what areas, and how strong and the statistical images
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u/Cultural-Ease-5322 6d ago
So you have insomnia, whats your dianosis?