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Discussion:
Retinitis Pigmentosa?
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I've been trying to find others with RP and compare notes. There seems to be noone near me that can even relate and I wondered..would anyone be willing to share their situation with RP and what they have experienced with their sight? Because this disease is so uncertain, I find it a bit of a comfort to know what others experience so I have some ideao f how my pattern of vision loss compares. Don't want to make anyone uncomfortable though.
Posted on 01/20/09, 02:39 pm
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Email me when others reply to this topic help
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Reply #1 - 01/27/09  11:54am
" Hi ive been trying to figure out whats wrong with my eyes, im not sure if RP is what i have or not, my eyes are bad at night, i keep getting all these different things from my doctor, ive been hearing i have a chance for glaucoma or some sort of macular thing that younger people get. I did my own research and i found that RP might be what i have since macular deteriaration is for older peole and im only 22. But anyways... my eyes are worse at night, i noticed this one night whenever i was putting my son to bed and i turned off his lights, and it was like i was looking around and i could see, but it was like my eye sight kept getting darker. I have a hard time just seeing at night and sometimes if my eyes are open they get blury. Still not sure whats wrong with my eyes, but im very worried ill be blind by the time im 40. "
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Reply #2 - 01/27/09  2:15pm
" Hi Shannon! It's difficult to say if RP is the problem with your eyes or not. I know the first specialist I saw wasn't sure at all what was wrong with my vision until he sent me for an electroretinogram which revealed that neither one of my retinas was responding to light and all responses were "severely reduced". That coupled with my visual field test results and my night blindness was what made the diagnosis. There are some very specific tests that your doctor can do to make a diagnosis and test your optic nerve, retinas, circulation to your eyes etc. Sometimes it's not a quick diagnosis and I know how hard that can be. I was driving and working and carrying on until they realized just how little I was seeing and then it all changed. You tend to adjust as the changes take place slowly over time and not realize until there is a fairly drastic reduction in vision. Even if you did have RP though, you could have vision way past 40. There are no hard and fast rules it seems. You must be concerned to have an answer though. "
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Reply #3 - 01/29/09  4:49pm
" Yes it is frustrating. They dont know if i have glaucoma or MD which is weird because im only 22!! I hope i have neither but who knows. Im going to start taking vitamins, they also told me that there is medicine i can take for MD. I hope i dont have bothe glau. and MD that would suck i would be completely blind. If i do go blind i want a seeing pony lol, thats the only way i cheer myself up about it! lol "
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Reply #4 - 01/29/09  9:45pm
" Seeing eye ponies are hard to get on public transportation. You also need bigger bags to clean up after them.

I hope you keep your vision, too, but rest assured that you CAN hack it, if you have to. "
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Reply #5 - 02/06/09  9:14am
" I was diagnosed with RP in December 2007. I would be more then willing to talk to you about it. You can post questions here or you can email me on here in private and I will send you my email address. "
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Reply #6 - 10/21/10  1:22pm
" my brother in law has been diagnosed with RP in his 20s, he is now 34. 10 years ago his sight wasn't great, but i have noticed a definite difference in his sight since then. i feel like he isnt being completely honest with how bad it's getting because he doesnt want to appear handicapped, but i want to help him any way i could. if anyone with RP is willing to share their stories, i would really be grateful. i know there isn't a cure, but i'd like to know what others have done to slow the process, or aid with sight. i bought him a pair of amber tinted sunglasses that really help him see better in sunlight. does anyone have any other suggestions or stories from experience what can make this easier for him?

thank you so much.. "
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Reply #7 - 12/22/10  2:38pm
" When I was younger, I was told that I have Leber's Congenital Amaurosis (LCA), but now I'm being told that it's possible that I have RP. Because both of these eye conditions are so closely related, it's hard to make an accurate diagnosis.

I've researched both conditions and they have similar symptoms.

So I'm interested in talking with people with RP and LCA.

Debbie "
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Reply #8 - 12/28/10  9:41pm
" Hey, I was diagnosed with RP when I was 14. My vision at this point is stable. My retinal specialist told me I had 10 yrs till my eyesight goes. Its been 9 yrs and things have been going strong. I noticed that my nightvision is complety gone. The light bothers me. My eyes are extremely sensitive. Sometimes i can't even put eyelinger on. lol "
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Reply #9 - 07/08/11  12:03am
" I am having retinitis pigmentosa since age 7, now I am 47. I tried many medicine incl Chinese herbs,acupuncture,traditional and untraditional and western food supplement,such as Amway,Shacklee,21st century,blackmore lutein,vitamin A,cod liver oil for the past 15 years. I even go for ear digging,believing it could be of help.It cost me me more than USD50,000.
Very frustrating and disappointed,NONE OF THESE HELPS!
Recently I go for Ozone therapy, now its only 5 treatments,I started seeing more clearly and I drive better now.
For other RP patient out there, try it in your country. I am doing it in Malaysia.
If you want more info, email me at jklfong@gmail.com "
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Reply #10 - 07/22/11  9:03pm
" My Dr is torn between RP and Stargardt's. All this is new and I am still trying to wrap my head around all of this. I went in for a simple cataract surgery and everything has gone downhill since. It turns out that I never needed cataract removal, they were very early stage. I have a new specialist and he did FAA testing, field of vision testing and wants me to have an ERG & EOG test done to determine which disorder I have. I am not able to return to my job (vision does not allow me to perform functions essential to job) and I have had to surrender my driver's license. The license thing has been hard, it is one thing to choose not to drive but another all together to have it taken from you. Dr wants me to consider starting Braille lessons while I am still seeing. I keep thinking "I can not be blind, even if only by legal definition". I think I am in denial...lol "

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