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  • Ebmd?

    Hey everyone. Been reading here for a few days (and learned a lot). Wanted to share my experience and hopefully get some more advice.

    I'm 39 years old. About a year, year and a half ago, I started waking up with my right eye burning, watering, feeling something was in it, etc. My PCP assumed it was just an eye infection. After my 3rd course of antibiotics, he sent me to an ENT specialist. He didn't see anything 'blocked', but tested me for allergies. Turns out I'm allergic to like 14 different things. So, he assumed this was the problem w/ my eye. Started me on meds, but every month or so my eye would act up, and he'd increase or give me new allergy meds. This went on for about a year.

    The Friday before the Superbowl I woke up and the eye felt terrible. Only this time, it didn't go away or get better as the day went on. By Saturday morning I thought I was dying. Those of you w/ RCE know what I'm talking about. Anyway, I went to an Urgent Care (since it was Saturday). They told me I needed seen asap by an eye specialist because I have corneal ulcers. They gave me an antibiotic. As Saturday progressed into Sunday, the pain worsened, and I started to get very blurred vision. I messaged a facebook acquaintance who is an out of state optometrist. She gave me the cell number of one in my town. I felt like an idiot, but I called him, and he saw me at his office within an hour. Mind you, this was literally during the Superbowl!

    He said I didn't have ulcers, but RCE. 25% of my cornea was gone. Gave me new antibiotics, a contact lens, and recommended Refresh drops and Genteal pm. It improved right away. I saw him several times over the past few weeks, and each time he said the eye is 'healed' but far from stable.

    Yesterday I woke up w/ what I thought was an erosion. Stopped in his office, and he said there was no abrasion, but i had edema that was causing the pain, blurred vision, etc. I went and bought Muro ointment, used it last night, and felt 75% better today. The doctor called today and said he thinks I have EBMD, and to buy the Muro drops, start Omega 3's, and continue w/ Refresh.

    This doctor has been a lifesaver. I never had a doctor CALL ME to discuss something. And what I think is great about him is, he admits that he is not an expert in any of this (he has a few pts w/ RCE), so he actually listens. Although I do have a little fear of misdiagnosis, mis-medicating, etc.

    Sorry this was so long-winded. Kind of therapeutic to type it all out! Anyway, a few questions maybe someone here can answer, as I won't see him again till next week.

    If I do have EBMD, would that cause erosions AND edema? I feel like most of my issues previously were probably edema (and maybe slight erosions). So if the edema is kept under control, would that help avoid erosions too? Meaning, are they directly linked?

    And this question is something I cannot find anything on, and I can't seem to figure it out. Looking back, it seems most of my eye problems have occured the night after I exercised very hard. I used to jog a lot, and when I did, that night I would have an erosion/edema. I blamed it on allergies. I've recently been doing the P90X workouts, and the last 3 times I did it, that night I had an erosion. Has anyone ever heard of a link between that? I've been trying to figure it out (prolonged increased heart rate, increased blood pressure, edema, etc), but I'm not nearly smart enough.

    Anyway, thanks for reading. Glad to be on the board. Well, not really, but you know what I mean!

  • #2
    Hi, Terrapin.

    I'm sorry that I am just now seeing this thread, and I'm sorry that you have EBMD manifesting with RCEs!

    Yes, EBMD causes cysts to form in the basement membrane, which makes it difficult for the epithelium to adhere. Those cysts are a swelling or edema. Yes, if the edema is under control, the erosions heal.

    I work out a lot, about an hour a day, and I do aerobics most days. I have not seen a change, due to exercising, but if you are sweating, there may be something in the composition of your sweat, getting into your eyes that might cause irritation or change the balance in your tear film. Might a headband work?

    Again, I'm sorry for the delay!

    Best wishes,
    Liz

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