ISO resources and advice on a medical mystery with loss of vision. — Scope | Disability forum
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ISO resources and advice on a medical mystery with loss of vision.

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mmrkmk
mmrkmk Community member Posts: 1 Listener
in Start here and say hello!
My name is Maegan and I am here to reach out to people for my boyfriend, Kyle. June of 2019 Kyle started experiencing blurred vision in both his eyes. His job was a mate on a fishing boat and thought maybe he didn’t have the right sunglasses or the glare was causing problems. After a few weeks of it getting worse to the point he was unable to hook fishing lines we went to an eye doctor. There he was told his vision was fine and he didn’t need glasses and there seems to be some inflammation and suggested getting blood pressure checked and blood work done. This began a series of doctors visits. An eye specialist saw inflammation on the optic nerve. The ER doctors, after a week of testing with Cat scan, MRI, spinal tap and overall evaluation found nothing wrong other than inflammation of the optic nerves. He was sent home with advice to take certain vitamins. As you can imagine a healthy 28 year old who can no longer work or do the things he’s done his whole life because he can’t see, took a severe toll on his mental health. It’s also important to add to this story that January of that same year, just 4 months earlier, Kyle experienced a very traumatic event. This is something myself feels is a possible theory. So, After the ER visit and months of no answers, depression and confusion, we began taking Kyle to the St. John-Clarke pain treatment center where I was involved in a case study with one of the students there and thought, maybe they can find something since for me, my issue had been one of which no modern doctor could figure out as well. The students had trouble with his alignment and sphenoid bone and once it got around the school about kyles loss of vision, we were approached about seeing the founder of the school, Paul. He took on kyle's case in a desperate and passionate attempt to figure out what was happening. He was able to discover a 6mm difference in leg length, causing a severe shift in his alignment. After many visits and a lift put in his shoes, this issue was fixed but still no eyesight change. With all that, his intense headaches and light sensitivity went away though. If it helps to explain a little of what he actually can see is he can see movement and shape but no detail. He can see where I am standing but not what my facial expressions are. He can see well enough to move around and walk to the store but uses a stick to help with finding curbs and to determine shadows like if it’s a puddle, or a change in the structure of the walkway. We are still seeing Paul and he has gotten to a point where he is stumped. His next idea is getting Kyle tested for food allergies. Maybe there’s something he has in his daily life that is not letting the inflammation go down but why is it just his optic nerve? Since the visits with Paul, change in diet, therapy for the depression and anxiety that has came with this burden, there has been small changes in the structure of his face, it’s not as puffy and dark anymore. We have many roads we want to explore but with Kyle getting a disability check that is just enough to cover rent and basic expenses each month, it leaves us limited in what we can do. Not having health insurance will make it impossible to find a specialist to administer food allergies and diagnose what and if there’s something in his body that shouldn’t be there. A sleep study is also something we feel needs to be done and could possibly give insight, along with an ENT specialist. The paths and the people we need on this journey are what are considered alternative medicine or holistic where we can pay out of pocket. We are ready at this point to possibly set up a go fund me account for these expenses if there are any out there we can find. So what it comes down to is us being here now to reach out to the world for opinions, thoughts, advice, anyone maybe knowing someone who this has happened to, anyone knowing how to be seen for things such as allergy testing, sleep study, ENT evaluation, mercury testing, DNA testing, a medical medium possibly, clinical trials and/or research studies, all without health insurance. We just want any and all the information we can get. Kyle wants to work, he loved his job fishing for Hubbards Marina and they loved having him as an employee. He wants not only to live his life the way he used to but to be someone who can be there and help others in need who are suffering from mystery illnesses, especially those who suffer deeply with the mental health aspect of it all. He is the most kind and generous person I’ve ever known and he is fighting and staying so strong for hope that we can find answers for him and maybe there’s more people out there who have struggled in this way. I thank you so much for taking the time to read this and will be so appreciative for any and all information anyone has.
Much love
-Maegan

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  • chiarieds
    chiarieds Community member Posts: 16,127 Disability Gamechanger
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    Hi @mmrkmk - & welcome to the community. I've read Kyle's story, & I'm so sorry for what you both must be going through. Unfortunately we are unable to give medical advice, even if any of us could work out why Kyle has this mystery illness. Scope is also based in the UK, & I gather you're in the USA. I can only hope that you do get some answers, & I wish you both the very best.
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