Diagnosis: ???????

I just came back from an appointment at the Johns Hopkins Wilmer Eye Institute. And I’m no closer to an answer than I was going in there. How many doctors have I seen so far…

  • Dr Stanley Shocket (retina specialist)
  • Dr Vivian Rismondo (neuro-ophthalmologist)
  • Dr Janet Sunness (The Hoover Low Vision and Blindness Center)
  • Dr Meyerlee (Wilmer Eye Institute)
  • Dr Daniel Gold (neuro-ophthalmologist)
  • Dr Amde Selassie Shifera (Uveitis Clinic)

I am just physically and emotionally exhausted.

I am tired of getting my hopes up for nothing. And I just feel so hopeless every time I am told that my eyes are normal. My brain is normal. Everything is so normal. Then why can’t I see? Why do I have this visual snow and blind spots? What am I going to do the day that the blind spots completely take over my vision??

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Look at my cool fluorescein angiogram. What a healthy eye 😐

My first doctor said it looks like there is decreased blood flow in this photo (the bottom part) but the second one I saw told me this is normal. I don’t know what to do now.

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6 thoughts on “Diagnosis: ???????

    1. I have been looking for people with something similar to me, but whenever I find a forum post or some info about it, it’s from 2011 or some long years ago. I’m trying to find some support groups or forums. Even to just know that I am not alone with strange eye problems lol. Thank you 🙂

      Liked by 1 person

      1. It must be frustrating. When I lost my ability to walk properly and the start of horrendous pain the doctors said they had no idea… Eight months later a private physio said it was a partial dislocation of my hip from an accident (someone dropped a bed on my foot 😦 ). The doctors had failed to diagnose it. But the pain remained, although it different forms. I couldn’t understand it. I asked the doctors why. They just dismissed my pain and disability and said I need to walk – ! – and that I will walk normally again soon. It was all lies…as I later found out they were covering their backs. I found out through my own internet research that I have permanent damage to my tissues and nerves. Through their negligence they had done this to me and apparantly they couldn’t be bothered about it. I would sue as it has robbed me of quality of life, but I don’t have the money.

        There must be at least one person who can help you. Have you tried contacting eye specialists in different countries?

        All the best : ) Hugs!

        Like

      2. I am so sorry to hear that! That is so ridiculous that they wanted you to just walk it off! It breaks my heart to hear stories like this where the doctors/medical professionals didn’t do everything in their power to help. They are not the ones who have to deal with the permanent damage and pain it causes!

        So far I have had doctors tell me that the blind spots in my eye are permanent.. and other doctors have told me that they may be reversible. I have not yet looked into other countries. I guess it would be a good excuse to travel lol. I wouldn’t mind, if they could give me some answers!

        Liked by 1 person

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