Severe chronic eye pain and visual phenomena that’s worsening no one can diagnose

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I have been dealing with an undiagnosed illness for three years now that has became so severe I am beyond desperate for help and my life back. I have wrote before but it was nothing in comparison I thought it was bad then I would love to instantly be that well. I have been to the university of Kentucky and admitted to u. Of Louisville been so many places to no avail. Even my neurologist has gave up and just been told I’m sorry with no help. The last eye specialist I saw called it visual phenomena and it has been progressing so fast the last few months it is not explainable. I still have good clarity but every source of light will get burned into my eyes whether it is dark or daylight anything bright gets burned into my eyes blue with my eyes open or closed. Look at almost any object like a house and look above it and see a clear outline of the house or trees powerlines almost anything I look at anymore even look at a door knob or anything and look elsewhere and see an outline of it. Have been having like circles in my right eye light sensitivity of course floaters and what looks like thousands of moving white dots when looking at the sky or something bright. This is only the beginning of the vision problems it is worse than I could ever explain and do not want to lose my vision or it keep getting worse or be like this. There truly is so many vision problems I could never lost them all or even describe them and occasionally blur ones that comes out of nowhere. Can look at writing on the tv or other things and look off and see that same word so so many debilitating things I am so desperate to have my vision back and this pain gone. The pain is every waking minute a burning pain that is always their and nothing completely rids the pain. I thought a toothache was bad but there is no comparison. Everything structurally with my eyes always checks out good and have been told it’s neurologic but so many mri and ct with nothing ever but the last one showed occasional hyperintensities in the subcortical white matter that said typical with migraines. I have gave up all hope on help from doctors with no help and it becoming what it has. It leveled off for a while and I got to go back to work and half way live a normal life. Was still in pain but my vision was nothing like this had some problems but would do anything good to have my vision like that again as I speak. The vision problems are with my eyes open and closed along with the pain that is beyond imagination. I do not mean to sound crazy so hopeful for my vision and eyes back maybe someone that has experienced this and been healed. I would not wish this on anyone or anything I just want life all life back. There’s other things going on numbness and muscle twitches other crazy things just my vision and eyes are by far the worst. My eyes have been getting worse red also which is terrifying alone just the redness. This is something I cannot escape and just want it to be a bad memory please Lord any relief for everything as I speak. Just to go outside and look around and see normal again and be pain free. If anyone can believe all this which is only the start and has experienced this with healing I would be more than grateful for any help. Like I said I’ve wrote before but it was nothing like this not even close I cannot lose my vision or be in pain or be like this there has to be healing for all this. Sometimes get like a streak of light in the corner of my eye have been checked for detachment and get bursts of blue and white and black dots at random times black shadows and lines and things that aren’t their and so so so much more. If anyone has any help it is needed more than words can ever say. Thank you. please anyone that has any help or insight please let me know. i am in no way crazy just beyond desperate for all life back. Thank you again so hopeful for any help at all

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  • Posted

    I'm so sorry you are going through this. I do not know what is causing it but you may want to see a regular doctor and be checked for any immune related illnesses especially since you are having other symptoms. Also you said you went to a neurologist, but I would go to a Neuro Ophthalmologist. You would have to be referred by your regular eye doctor but they would be more specialized in this area than a regular neurologist. I hope you find answers soon.

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    • Posted

      i have saw two neuro op one at louisville and one at the university of Kentucky when problems were bad but nothing like this with no help they had no idea. i am so desperate foe healing of everything so much going on and our vision and eyes are the most precious thing besides life itself. theres no words for what this has became and all i ever want is my life back went from working doing everything to being stuck and now its all i can do to cope holding on with faith in God knowing it all has to get better. so hopeful someone could help me that had dealt with this and been healed not that i would ever wish this on anyone just to know someone has dealt with something so bad and been healed. with no help from doctors i know its not there fault ive searched to no end hoping someone could help its life and everything that meant the most thats all i ever want back is all life back. sound crazy pouring out my heart to strangers but i know anyone would

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  • Posted

    What you describe is familiar to me. Recently diagnosed w/ Crohn's / Ulcerative Colitis, I began treatment. I went to the optometrist for the following reason: Images are burnt-in to my eyes for extended periods of time, 5-10 seconds, like monitor burn-in. They told me the same as you: It's neurological.

    Then things got worse. I could see a shape in my eye, especially during low-light, that would fade into the background. This was different from the many floaters I have which are typically visible on brighter backgrounds. Optometrist again told me it was neurological. So I went to the hospital where they did an OCT and found a lesion growing. What's interesting to me is that the cells that are damaged seem to need more light to transmit to the brain, otherwise the object fades much more slowly remaining a visual defect. Lately my eyes are also experiencing intermittent internal pain and redness which I have not had checked out in hopes it corrects and does not get worse.

    So here's my theory for you: an immune system response attacking your eyes. My theory is that if the retina or the cells there are swelling due to who knows what, perhaps macrophages or uveitis or something completely different, but when the cells are damaged or otherwise inhibited they are like a floating ground in electronics, they need more energy to tell the brain what to see, so your brain keeps the latest image it saw until it learns better.

    The good news from what you describe is that this has oscillated between good/worse/good/worse. This might mean this is correctable once the underlying cause is treated.

    For me, they did heart x-ray, zoonotic blood tests, all the blood work. Everything looks good. Which sucks because if you don't know the cause you cannot treat it. Yet my eyes hurt, they are red, there's a lesion in there that's hopefully reducing, and I also get flashes of light like you, floaters like you, and image burn-in like you, but my symptoms are not as severe as yours. For me we know there is an immune system problem and often w/ IBS (inflammatory bowel syndrome) there are eye problems. My gastroentrologist and general surgeon believe that my IBS was only apparent the past 1.5 years, with terrible rectal bleeding, but they suspect I've had it for at least the past decade. You might need a colonoscopy or something to check things out? I'm not a doctor, although there are similarities between our symptoms.

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    • Posted

      thank you for the reply. so much going on and been so many places when it was nothing like this i truly dont have a clue where to turn. have all but gave up on medical doctors my last neurologist completely believed me and just gave up had no idea and no ideas on what i needed to do. things are so bad at the moment has completely stopped all normal life noone truly knows how precious our vision and eyes are. ive never got ro see and feel impeovement it did level off dor a long while or seemed to and for to go back to work was still in pain but so so happy and hopwful it was all getting better. still havent lost faith but only God knows how badly i need this to stop progressing and see and feel any impeovement in these absolutely awful vision problems and constant pain. so much to live for and this has taken everything normal at the moment and so badly just want it back. my regular doctor has no idea what to do it is the most hurtful thing ever not just physically but emotionally being my vision and these problems being so bad i cant even go to a store and look around. Lord please what any improvement would mean for these insane vision problems and the pain also. And everything else going on has defintely caused anxiety through the roof but it would anyone at all. so hopeful someone would chime in thats experienced something like this like you did and had ideas for improvement any at all to know i am getting better. thank you foe the reply Lord please let all this be over and things all things start coming back. new bluriness in my left eye today just so many new things please how hard i Pray none of this stays or any worse anymore.

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