Undiagnosed and rare conditions
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Severe chronic eye pain and visual problems worsening no one can diagnose

aaronh819aaronh819 Member Posts: 2 Listener
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 on other sites  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 blurriness 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. This is progressing so fast has completely stopped normal life please what it would mean to see and feel improvement any at all not any worse or like this. 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. I know we’re not suppose to but if anyone has any help I’m beyond words in need for my life all life back when no one has been able to help so you can text me if anyone can help and is hopefully willing. Thank you again so hopeful for any help at all. My number is [removed by moderator] if I’m allowed to post beyond words desperate for help

Replies

  • woodbinewoodbine Community Co-Production Group Posts: 3,790 Disability Gamechanger
    Hi @aaronh819 welcome to scope, i'm really sorry but its very hard to read a solid block of text. I take it that you are in the U.S.A? this is of course a U.K charity/forum, I hope you can get the help you need. Good luck.
    my advice is given freely and is correct to the best of my knowledge.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    Hello @aaronh819. I'm so sorry to read about how much pain and distress you seem to be in. Unfortunately none of us here are medically trained so it wouldn't be appropriate to advise. It's not clear from your post where you're based, but if you're in the US, it might be worth having a look at UDN.
    Senior Community Partner
    Scope

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  • mikehughescqmikehughescq Member Posts: 5,998 Disability Gamechanger
    None of us can give medical advice or a diagnosis here but anything involving eyes and pain is going to come down to muscles; light sensitivity or pressure. Those are the areas to explore. You've already suggested it's not pressure if structure is okay so maybe look deeper into the other two. 

    I can think of at least 15 reasons why muscles twitch so I'd maybe work my way through those to narrow things down as none of us here are ever going to know or be taking your medical history. 
  • alieshiaalieshia Member Posts: 73 Courageous
    Have you had a lumbar puncture? My vision problems were diagnosed based on LP. The pressure in my skull is too high and it badly effects my vision.
  • aaronh819aaronh819 Member Posts: 2 Listener
    Yes I did in 2018 everything was good. Nothing was near like this I am so desperate for any relief from everything please Lord
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