Vision Loss with PEM

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One of my 55 major symptoms include the loss of vision when with trenches in my rather constant state of PEM. I can see muted light, but my actual vision is gone. I explain it best like this: try imagining an artists glass pallet filled with a mess of smeared color (zero definition, depth, spacial relation, etc), pressed right up against your nose and you’re trying to look through it. It can last from 30 minutes up to 5 hours as the longest so far. My eye doctor says my eyes are healthy and that means the issue is coming from the brain. ME/CFS - obviously… My question is has anyone else had/have this symptom or heard of it. I’ve yet to find it listed anywhere.
Gratitude.
 

Bowser

Senior Member
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It really does sound like intracranial hypertension. But your eye doctor should have mentioned if you have papilledema. Is it possible for your eyes to be affected without papilledema? I’m not sure.

Do you have an empty sella on your brain MRI?
 
Messages
79
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302
Location
New England
It really does sound like intracranial hypertension. But your eye doctor should have mentioned if you have papilledema. Is it possible for your eyes to be affected without papilledema? I’m not sure.

Do you have an empty sella on your brain MRI?
MRI looked fine, but I think we will be looking into other tests in the New Year that deal more with the spine. Autoimmune tests keep coming back negative.
 
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Just in case this interests you, there is a discussion of the potential limitations of brain MRIs to diagnose neurological condition:
https://forums.phoenixrising.me/threads/white-matter-lesions.79023/
Pyrrhus,


You are correct in that MRIs are not without fault and the technology does have its limits. Even the highest set imagery of an MRI cannot see everything. When my wife was going through the diagnosis processes for Parkinson’s, the MRI would show a general possible pattern. Once it showed that, then she was sent in for a more expensive DAT-Scam test only performed on those suspected of having a Parkinsonian condition. But even the more accurate DAT-Scan can only tell if the person has a Parkinsonian condition, but not which one. Physical diagnosis must then follow.


As I think we all know here on this forum, this is one such reason it takes so long to properly diagnose medical complications… and so many never are.


Thanks once agin for sharing.


All the best-