Discussions By Condition: Eye conditions

Eye condition without a name

Posted In: Eye conditions 5 Replies
  • Posted By: Danillac
  • February 19, 2007
  • 03:01 AM

Not that this is going to be a huge surprise, but I have a condition without a name!
My condition is as follows. I have been told that my condition is "x link dominant." I have been told I have "sensory retinal dystrophy." I have also been told I have "rod/cone dystrophy." Of course no one wants to classify this under one of these, except the x link, because I have other things that so along with it.
Here are my symptoms. I have myopia, astigmatism, and my cones do not respond when I have and Electoretinagram performed! That is it in a nutshell. I am also color blind, mainly to blue. I feel that my color blindness is lack of education. Unlike most who are full blown color blind and cannot really tell between colors, I can. What I mean is, I can tell that things are different colors, I just cannot tell you what the color is. I have been in contact with numerous doctors attempting to volunteer for stem cell clinicals. Some tell me they need to know what I have. Some tell me that I should contact this hospital or that. I just want some kind of answer as to what I have.
I have looked into having LASIK done. NO ONE will even consider doing it. Not because it is to risky, but because it will hurt their statistics.
I apologize, I am just venting. I am just so aggrivated that NO ONE can tell me squat. Or my favorite, they simply won't contact you. I have sent countless e-mails and phone calls with NO kind of return.
If anyone on this forum has these symptoms, please contact me, especially if you have a name for the condition. I am certain it is x linked related, but what is it called besides that. Thank you so much for listening, and I hope to be talking with you soon. If you would like, feel free to contact me via e-mail. My address is jadan@mywdo.com. Thanks again, Danny Wolfe in Missouri

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5 Replies:

  • the distinction of "rod/cone" or "cone/rod" dystrophy is generally which is more severely affected on an ERG. "X-linked dominant" indicates the genetic inheritance pattern in your family.those with retinal dystrophies are not lasik candidates period. it has nothing to do with "statistics" as there is no reporting of lasik outcomes.if you've had a ERG, you've clearly been to a retinal specialist. a little north of you, at the University of Iowa Hospitals & Clinics, Dr. Ed Stone is a geneticist and retinal specialist and he may be able to either provide you more information or genetic testing to characterize your exact problem.
    Anonymous 42789 Replies
    • February 21, 2007
    • 03:28 AM
    • 0
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  • I appreciate the info about the doctor in Iowa. I wanted to mention that the reason I think LASIK would benefit me is the following. I know my cones are not functioning. But I also have pretty bad astigmatism. I as well as the doctor that did the ERG feel that it would get rid of one of my problems. My condition is a compound one. The cones not working is bad enough, but with the astigmatism, it just makes everything that much worse.As for the "x linked" thought, I have several male relatives that have the exact same conditions that I have. All of these relatives are from the same side of my family that have my condition. Again, I do thank you for the information, and I will certainly follow up with making contact with this doctor. Danny in Missouri
    Danillac 1 Replies
    • February 22, 2007
    • 02:04 AM
    • 0
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  • i see... if you do make the trek up to Iowa, maybe ask Dr. Stone what his thoughts are on the astigmatism and/or set an appointment with Dr. Ken Goins (their Cornea & LASIK specialist) at the same time.good luck!
    Anonymous 42789 Replies
    • February 22, 2007
    • 03:01 AM
    • 0
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  • I would consider talking to a eye doctor for your condition. I just had lasik eye surgery and it worked out great for my eyes. I have perfect vision and I'm loving it. I did a lot of research on lasik information before I had the surgery, I would recommed the same to you.
    kellz123 1 Replies
    • August 16, 2007
    • 01:34 AM
    • 0
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  • Before I had my treatment, I had trouble seeing clearly even with my glasses on. Now I can see my alarm clock without holding it in front of my face and I can see road signs without squinting. I don’t hate driving at night anymore. My life is so much better now; I only wish I had gone to Lasik-1 sooner! Thank you for helping me see what I’ve been missing!"
    mariecon555 1 Replies
    • January 22, 2008
    • 08:54 PM
    • 0
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