Vision Loss with PEM

[Nord Wolf]

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.

 

[WinterWren]

Have you been checked for optic neuritis and MS?

 

[xebex]

could be intracranial hypertension

 

[Gingergrrl]

Do you have any other symptoms that could be Autoimmune Encephalitis? I haven't read your other posts and apologize if you have already mentioned this.

 

[Bowser]

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?

 

[Nord Wolf]

Have you been checked for optic neuritis and MS?

Been tested, yes, with no negative results pointing to such issues. Though there are more and lesser performed tests it seems to check...

 

[Nord Wolf]

Do you have any other symptoms that could be Autoimmune Encephalitis? I haven't read your other posts and apologize if you have already mentioned this.

So far no other symptoms to suggest that I'm aware of. Brain mri was fine, but we've not taken any recent images of the spine. That may change as I pursue CIS with a clinician in January.

 

[Nord Wolf]

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.

 

[Pyrrhus]

Brain mri was fine

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/

 

[Nord Wolf]

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-