Retinitis Pigmentosa Support Group

Hello all,

I hope no one minds me invading your space here. I don't have RP (that I'm aware of) but it seems likely that I do have retina issues. I'm no stranger to vision issues - amblyopia since I was a child, extreme high myopia in both eyes and was just diagnosed with convergence insufficiency (CI) yesterday. Not to mention low contrast.

Yesterday was the most comprehensive eye exam ever! I met with a developmental optometrist, who determined that I do have poor binocularity, fusion, etc. He really listened to what I said and performed the contrast sensitivity test as well as a peripheral field of vision test.

See, I have a driver's license (he was surprised that I even had one given that I was at 20/70 in the good eye and 20/100 in the bad eye when I was 17). I told him that I was medically cleared by my then-doctor back then. I've been in a few accidents and noticed that each time, the car was coming from my left or it was when I merged to the left lane. I've been suspecting for some time that something is wrong with my peripheral vision...but most doctors only care about visual acuity

I have read the discussion on driving here and agree with much of what's written. He tested me yesterday and then said my peripheral vision is poor in both eyes! Something about one eye blocks the other or causes a blindspot??? Even I could tell that I wasn't doing well on the test because I kept trying to move my eye to the side to see the white ball on the stick. Very scary. I'm heeding his warning that "you should not drive at night." I'm glad to have had the contrast test done - confirmed what I've wondered since I was 8! He even said that the low contrast is why driving at night is so difficult! I'm grateful to finally have data to prove that my struggles with driving is not in my head but am so very angry that it took 23 years to get a contrast sensitivity test and 13 years since my license, to have my peripheral vision tested. I don't think NJ has a field of vision requirement for driving like other states - might be why there are so many accidents here!

I've had increasing floaters (not like hundreds or anything but just more prevalent, I'm more aware of them) and flashes of light (again, not constant). Are these signs of retinal disease? I will see the specialist he's referring me to. What can I expect in a retina exam? I'm not sure if my peripheral vision has only recently deteriorated or if it's always been messed up given that it's never been tested before. There is something to be said about listening to intuition and following gut instincts!

Thanks for reading and any advice - I'm terrified! And praying that it's not RP (- genetic x-linked? not in my family as far as I know).

Beni

Hi, welcome to the group! I'll be interested to hear about the results of your tests, as you describe things that match some of my symptoms. Contrast is becoming my biggest central vision problem. Overcast days and the half-hour between sunset and darkness are my biggest problems. I actually do better in full darkness than I do in twilight, which is not typical for RP.

My brother has been diagnosed with cone dystrophy, while I have been diagnosed with RP. I think we share some traits between the two as well.

Stick around and let us know how it goes.

thanks for your response! I'm hoping you're not suggesting that bc I have some of your symptoms that this means that I have RP??? Now, I'm really freaked out! I was thinking maybe glaucoma or retinal detachment but RP NEVER crossed my mind! I thought that RP is genetic, inherited, etc. Am I wrong?

What are "classic" RP symptoms?

Hi crazyvision , welcome to this awesome platform of Rp.About your RP??, picture will be clear after your test results and retina docs exam and opinion.

@Mono, it comes to know from some research trials from standford university that contrast sensitivity is sign and result of various retinal disorders. It has been found that contrast sensitivity is very poor though vision accuity is better 20/30 in RP and such complicated disorders, CME,Glucoma etc.You will get more about it putting contrast sensitivity and retinal disorders in search option. You might have noticed ,when you go to doc for eye exam ,they puts drops to dialet irish.In the starting we are able to see bright light and things in the room are visible clearly and as effect of drop increase it become so bright so we are unable see only very brightlight fuzzy vision. Again when effect decreases we experience clear vision for some time. It means dialation and constriction function of irish is not normal with us. Most docs gives us answer ,it all is due to your rp and we are unable to do anything...

No, I'm not suggesting that you have RP, nor can anyone but a specialist say that you don't. To me, without specific tests for RP (Humphrey visual field and then an ERG), there just seems to be a maze of overlapping symptoms from a variety of disorders. As I mentioned, my brother and I compared vision for years assuming we had nearly identical issues. When tested however, he was diagnosed as having cone dystrophy, while I was diagnosed with RP.

Likewise, within a diagnosis, there can be quite a variety of symptoms. Many people with RP retain better than 20/40 central vision right up the point when the macula gets involved, but I have around 20 degrees in my good and have been losing a line per visit lately, and am now at 20/80 best corrected central vision.

All of this is why careful testing is needed to confirm or reject any anecdotal suspicions that you have. Let us know how it goes.

Hi crazyvision and welcome! Yes, RP is genetic, but approximately 50% of cases display an either recessive or portico pattern of inheritance, meaning there might be an isolated case in the family (like me!). "Classic symptoms include night blindness, constricted peripheral vision, and "bone spicules" appearing on the retina (dark pigment spots). Some people with RP also develop a "waxy pallor" to their optic nerve head. Many of us also experience photopsia (flashing lights) and floaters. Some of us have additional complications like CME (swelling of the macula) and cataracts as well.

Like others have said, you really can't diagnose it without an ERG, but even if you do have it, I promise it's not the end of the world! It sounds like you've been coping with vision issues for some time, and like most of us have discovered, by learning just a few (relatively) simple adaptations, you can still live a pretty normal life.

thank you all! I talked to my dr. and he said that the only reason he's insistent on me seeing a retina specialist is bc of my extreme myopia...I'm at more risk for retina problems (so sounds more like a cya rather than suspecting something).

I wonder if maybe the Vision Field Test did not go well because I was so tired on Friday? I had already been in his office for over 2 hours. I did have a different test done last month (lights and stimulus - what is that called?) and although I struggled in the beginning, it was mostly due to not understanding that I could see the light on both sides and had to say so - once I realized that, it seemed that I tested ok. But oddly enough, the OT that day also tested my peripheral vision with a stick and a blue ball on it. I really struggled with that test in the same way as the test on Friday (black stick and white ball).

I feel a little better - less nervous now and will go on Tue. just for the peace of mind.

Yep - I've dealt with vision issues my entire life it seems. Now, the question is whether I have even bigger issues and what do I do for work. I am an attorney and if I truly can't drive due to my constricted peripheral vision (he used that exact wording), then I have to leave the field altogether (which might be a blessing in this economy) or relocate to D.C. and practice there. Or better yet, relocate to any city so I can maintain my independence and still use my legal education somehow (mediation/dispute resolution maybe - more listening and less reading, which would be good for my eyes). This might be a blessing in disguise.

He said my retinas are healthy!!!! Shone light into my eyes a lot after the dilation. Pressure is good so no glaucoma. He did NOT do the humphrey test or the ERG to my knowledge. Still no explanation for why I did so poorly on the peripheral field of vision test given by my optometrist. But an OT did perform the Humphrey (is that the one with the lights stimulus?) and I did fine with that one.

He even said that while I'm extremely near-sighted, I am NOT showing signs of degenerative myopia!

Thank you all!

Do there any corneal or postcapular issue? Do he discussed about lasik ?

Monochrome -

I read your post and have the same issues with the light timing - better when completely dark than at the inbetween times of daylight. I ahve had night blindness since I was very young - age 6 or so. It has always been a struggle and even though I didn't night drive when I got my license I have been now for about 10 years, with little difficulty. I just know that if it's raining I do not drive at all at night since that seems to make a huge difference in being able to see clearly. I have never had restrictions on my license and feel grateful for that. With two children and so many things to do in the evenings - it would be quite difficult and since I live about 8 miles out of town in the country it would be nearly impossible to get things done. I am so extremely grateful that I can still drive.