My timeline

Around October of 2007 I started noticing floaters appear in my vision in my left eye. I asked a few people (including a nurse at an optometrist’s office)  about it and was told not to worry that it was part of the normal aging process.  Oooooo-K.  They even told me ways that I could make them more visible by looking at blank pieces of paper or looking at the sky on a particularly blue day.   How that was supposed to put me more at ease I have no idea.

The floaters remained somewhat stable and I became used to them.  In the Spring of 2008 I noticed I was having some trouble with my night vision while driving.  This is not the ideal way to notice your vision is askew,  I decided to go and have a regular eye examination.  I had not had an eye checkup  I think in nearly 20 years.  I had never had any trouble with my vision and it never ocurred to me outside of a normal physical to have them checked for anything else.

We did an eye exam with one eye covered each time, and this was the first time I really noticed how distorted my vision in my left eye was.  It was a little scary, but something I figured could be corrected rather easily.  The doctor began using the weird apparatus where they ask you if you can see better or worse each time they change the lens. He flipped it around several times and was obviously getting frustrated with my answers.  At the end of the examination he told me there was something wrong with my eye, however there was nothing he could do to help me as it did not involve the lens, but rather my retina. He referred me to a retinal specialist here in Atlanta.

Hmmmmm, this small challenge with my vision was not going to be as easily corrected as I thought.  I went to Dr. Leff’s office and filled out all the necessary paper work and got back to see him.  After a rather long wait, he appeared,  and was obviously in a hurry, and looked in my eye, and abruptly pulled away.

“You need to have bloodwork done,” and he was off.  Ok, what the hell was that about.  He suggested through his nurse that I go to my family physician and have blood work done. I got the message that he saw something but did not want to have anything to do with it.

After some professional jibber jabber on the phone with several calls my family physician agreed to do this guy’s labwork.  I am standing at the checkout while the nurses and the Dr, talk with my family physician’s office about me with their hands covering the phone.  I am getting nervous, what are they whispering about and how come no one is telling me what is going on.  Uggggh!

I go home to my wife and tell her about what happened that afternoon and ask her if she will accompany me to my family physician as I am getting worried about all the whispering.  Of course she agrees and we go to my appointment the next morning.  We are in the examination room and Dr. G my family physician comes back and begins talking about what we are going to be doing that day.  I stop him in the middle of his talking and ask him to please tell me what is going on.  I explain that the other guy Dr. Leff, the retinal specialist, had not told me what was going on.  He looked at me kind of strange and says, “he didn’t tell you?”

Ok, now my heart sank a bit.  He looks at me and then at my wife and asks her to leave the room.  Holy &**&^*&*^#@!  This can not be good…  my heart sank all the way to the floor.  After my wife has left the room the Dr asks me if I have had any affairs outside of my marriage.  Ok, I see where this is going and I start to feel a little better knowing that I do no have to worry about STDs as I have not stepped outside my marriage and I believe wholeheartedly neither has my wife.  I answer no, and he asks again, and then he tells me… normally when we see this kind of thing happening it is usually in patients who are HIV+.

What the &*^@!  My heart sinks somewhere down below the equator I am sure.  As I sit here and recount this still feel ill thinking about it.  Dr. G asks if it is ok to bring my wife back into the room and if he can tell her.  My first thought is hell yeah, bring that dirty whore in here, if I have it it sure as hell was not because of me, but reason prevailed and my wife joined us again in the room and the Dr. explained the same thing to her as he had to me.  He said we had to rule it out and we would have the results next week sometime. OMG!!!  This was early on a Thursday morning, I still had to go to work.   The day sucked.

I went home that evening and talked with my wife who for some reason retained the patience of a saint and was very supportive.  She is I think one of the strongest of people I know.  She comforted me, and I did my best to return the favor, but my mind was off somewhere wandering and wondering what the hell is going on.  We were watching Lost on Netflix, and I am pretty sure we watched 4 or 5 episodes that night. 

I got a phone call around 11:30 on Friday from the nurse at Dr. G’s office, who told me my test results were back and that I was Negative for the HIV.  Ohhhhhh sweeet Mary mother of God!!!!  We had a part Friday night, really, we invited 20 or so people over to celebrate.  

With one major bullet dodged, I went back to the Retinal Specialist, Dr. Leff.  He came in looked at me again and said he needed me to have more tests done.  I looked into all sorts of different machines, got shot up with yellow liquid, so it would show up when they took pictures of my eye.  Aster all the tests, Dr. Leff looked a the results, and said he could fix my eye, or the current challenge with it, but he still thought I needed more test to discover what was causing a the macular pucker, so he referred me to Emory.  

Emory is fantastic, or at least all the Dr.’s I have dealt with so far.  Dr. Yan who is my treating physician in stark contrast to Dr. Leff takes time to explain what is actually happening with my eye and her intern Dr. Cribbs makes you feel as though you are not just another piece of meat being moved though the factory (ala Dr. Leff)

After arriving at Emory they ran some of the same tests that had already been done at Dr. Leff’s office and a few more including a chest x-ray to rule out TB and sarcoidosis.  They even screened me for sickle cell. The black nurse looked at me kind of oddly and said  while laughing “are they sure they think you could have sickle cell” (I am white, not caucasian, but fish belly, I burn if I think about the sun, Irish white.) We joked about it for a bit, and she shared with me that she actually had sarcoidosis, which (be it true or not) helped to put me at ease.

After all the tests were done, and my 4th or 5th visit to Emory, Dr. Cribbs told me that what I had was Eale’s disease.  I had come across this term on the internet before and it seemed like with all my presenting charaterstics and lack of real diagnosis, this i where I would fit in.

Well at least we now have something to call it, I have Eale’s disease….

Advertisements

5 Comments

  1. Neil said,

    April 24, 2011 at 9:53 pm

    Hi there,

    My story is very similar to yourself. I have had every blood test under the sun and a chest x-ray but all are clear. The doctor mentioned that I may have eales disease. I am so worried at this prospect as I already have other health problems and I can’t risk losing anything else. the thought of eales disease is making me sucicidal. Can you please let me know how you are getting on with it? I would love to hear from you. Maybe you can ease my mind a little.

  2. Mary Harrington said,

    December 2, 2011 at 8:19 am

    I am 47 I have had eayles for over a decade as frustrating as the symptoms and treatment can get the good news is they can treat it and I was told it is not systemic. This link is really helping me I hope it will help you also. The way I figure it I have been checked for every disease in the book and have a better check list of what I don’t have then most. Think of the positive hope you feel better soon.

  3. Lynn said,

    February 21, 2012 at 9:05 pm

    My great-nephew has been tested for everything and they are now saying it’s Eales. The doctors have been very rude to my niece–she and her son are terrified, and she just wants to ask some questions. He’s on prednisone right now, and they were scheduled to cauterize the vessels behind his eye today, but they ended up not doing that. What treatments have all of you received? Mary, you say, “the good news is they can treat it.” How good is the prognosis for the future? Are you limited physically (from exercise, picking things up, etc?)

    • erareeve said,

      February 23, 2012 at 3:12 pm

      I had a vitrectomy and the vessels cauterized. I think the Dr’s tend to be rude because many of them do not understand and are frustrated as well, but that is me playing armcahir psychologist. I am not a Dr, just a patient who went through it and was terrified, frustrated and is now living a very normal life. I have no restrictions other than my altered vision. I can do everything I was capable of before and often with a little more vigor as I don’t take my health or vision for granted as much anymore.

  4. Lynn said,

    February 24, 2012 at 9:51 pm

    My prayers are with your continued health. You have given us a ray of hope, that my great-nephew may have a normal life!! We’re still not sure if it’s Eales or Vasculitis. Please pray for us as we go through this trial. 🙂 Thank you for responding!!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: