Vision Issue

BayouSwitch

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Joined
Mar 28, 2017
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I'm 13 years out and have had several issues that plague some of us DS'ers. However, my latest medical issue has me a little worried and I was wondering if anyone else might have had similar experiences. Before I go on I want to say that I often try to link everything to the DS, possibly sometimes I shouldn't but sometimes there is definitely a connection. I truly believe that in order to get a clearer picture you have to explore alot of dead ends. I'm worried that vitamin issues might have played a part in this latest medical oddity. On Sunday night I was about to sit down and enjoy a glass of wine when I noticed my right eye had a large blurry patch in the center. Vision around the outer ring was fine just a large blur in the center. It went away and then came back again a few minutes later. This process repeated several times over the next 20 minutes or so. Large blurry gray patch in the center of the right eye. No pain. I contacted my eye Doctor and he told me that I might be experiencing a TIA and that I should take an aspirin and go to the ER. I did. After blood work and a CAT scan it was determined that I was not having a TIA and that the scan was clear as was my blood work. Advised to follow up with Opthalmologist. I did the next morning. After the usual exam and a couple of photo images of the eye, I was advised that I might have a Central Retinal Vein Occlusion in the right eye and that I should see a Retina specialist, which I will do tomorrow morning. Of course, I must do some research on this to try to settle my brain as I am very frightened of losing my eye sight. I do not fit into the usual category of someone with a CRVO. I am not diabetic, I do not have high blood pressure, my age is 50 and so on. I did find some information that suggests that on occasion there are conditions that mimic CRVO that might be tied to Iron Deficiency Anemia which I have and am treated for and have Iron IV infusions every 8 weeks.

So, to make a long short short and confusing I just wanted to reach out to see if anyone out there has had a similar experience. Of course, Doctors are dubious about the wide reaching effects of the DS and the subsequent Vitamin issues, etc. So, I guess I just wanted a little support and a little more information. Thanks y'all.
 
First, I am not an MD - I just pretend to play one on the innerwebs. But I also have a few eye problems I've been through - retinal tears that had to be laser spot-welded (over 700 zaps), early and repeated posterior vitreous detachments, Salzmann's nodules on my cornea, visual migraines (temporary loss of vision on one side without pain), floaters that had to be lasered, early cataracts, in addition to poor night vision, myopia and astigmatism. So I totally get the fear of losing your vision. ETA: NONE of this is related to my DS, and most of it happened BEFORE my DS.

I would think all of this is an emergency situation to make sure if blood flow has been interrupted, it is cleared as quickly as possible. I would think something coming on suddenly like that is unlikely to be related to nutrition. I would try to get in to see the retinal specialist TODAY if possible, if you are still experiencing the symptoms. And make sure someone else drives, because you're going to be dilated, and shouldn't drive in the first place if your vision is impaired.

Good luck and let us know what you find out.
 
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I've had a few issues with my eyes but never related to my DS.

I have a freckle on my left eye. Been there for about 10 years and is photographed yearly to be sure it isn't growing. I have floaters, I still have a mild astigmatism in my left eye. I recently (as in late April/early May) had cataract surgery on each with a slightly higher chance of retinal detachment. Mine stayed fine.

Anything to do with my eyes scares the shit out of me. Going blind is not in my sphere of what I want to happen to me. So I understand.

While also verifying it's not anemia related, get it checked ASAP.
 
I have severe dry eye (distorted vision, spots in front of eye) where the symptoms improve dramatically after I get a Vit A injection. Dry eye is very painful and serious. Left untreated the cornea can tear and vision can be permanently lost. At my worst, I could not read an eye chart. I mean I could not even see letters, it looked like drips of ink running down the wall. For me, the Vit A norms are very low, and not my norm. I need my Vit A level to be in the mid-range to help reduce dry eye symptoms. However, I do have to add that dry eye tends to run in my family. At this point, no one else in my family checks Vit A levels because eye doctors always assume it is normal.
 
Let me just add that I already have, and am treated for Dry Eye, which I'm told is unrelated to this problem. Also, after taking the prescribed Aspirin before going to the E. R. my symptoms went away and have not returned since. So, it seems that this could be vascular in nature. I am continuing to take Aspirin until I see the specialist tomorrow for further testing.
 
Have seen Retinal specialist and he believes there has been some sort of embolytic activity. Was sent over to Cardiologist and will be moving forward with Corrotid Artery Ultrasound, Heart Ultrasound etc. Pretty scared at this point.

Is it possible to have artery issues with good cholesterol levels?
 
Have seen Retinal specialist and he believes there has been some sort of embolytic activity. Was sent over to Cardiologist and will be moving forward with Corrotid Artery Ultrasound, Heart Ultrasound etc. Pretty scared at this point.

Is it possible to have artery issues with good cholesterol levels?
Yes, genetics play a part in arterial issues.
 
Well, no real update yet but I go tomorrow for the carrotid ultrasound and a heart ultrasound and to be fitted with a Holter Monitor. Not sure how long I'll have to wear it. Go for results on 9/6. Please send me your good thoughts everyone. Pretty scared when they start throwing around words like stroke, heart problems, etc.
 
Well, no real update yet but I go tomorrow for the carrotid ultrasound and a heart ultrasound and to be fitted with a Holter Monitor. Not sure how long I'll have to wear it. Go for results on 9/6. Please send me your good thoughts everyone. Pretty scared when they start throwing around words like stroke, heart problems, etc.

Wishing you the best. The more you know the better!
 
Well, I went yesterday for the Carotid artery ultrasound and to be fitted with the Holter monitor which I have to wear for 24 hours. However, they were unable to do the Heart ultrasound because of my implants. Therefore, I must now do a TransEsophageal Echo. This just keeps getting better. Now, this will be a hospital procedure with an IV etc.

Not having fun.
 
Well, I went yesterday for the Carotid artery ultrasound and to be fitted with the Holter monitor which I have to wear for 24 hours. However, they were unable to do the Heart ultrasound because of my implants. Therefore, I must now do a TransEsophageal Echo. This just keeps getting better. Now, this will be a hospital procedure with an IV etc.

Not having fun.
I bet you aren't having fun but it should give you answers.
 
I'm sorry you have to go through all this. Vision issues are scary. I was having blurry, twinkly patches two years ago but it turned out to be the aura from previously-undiagnosed migraines. And all of Jan and Feb this year I was having pronounced double vision which unnerved me but no neuro-opthalmalogist had space to see me until April by which time it went away on its own. It was terrifying to see two of everything, including my husband -- believe me, one is plenty. Try not to fret about conditions that you *may* have until you're actually diagnosed.

Here's a funny story to think about while wearing the monitor: I had to wear the Holter monitor once for 24 hrs -- one also keeps a concurrent diary detailing all physical activity. The nurse told me a young woman had to wear one and her very attractive boyfriend dropped the device off along with the diary the next day. The nurse started reading the woman's activity diary where she marked "had sex" every 60 minutes from shortly after she left the hospital where the device was attached, through to midnight that night, then started up again at 6a the next morning!! This guy was a STUD! The nurse was jealous of having all this sex with this hot guy... until she compared the diary with the Holter printout and saw that the woman's heart rate never increased during any of these sex-capades, in fact a couple of times it decreased. Sooo frequency does not a good lover make!

Hope you get some answers.
 
Well, the Hurry Up and Wait syndrome is happening again. One doctor whisks you off to a Cardiologist with haste only to be told the test you need can't be scheduled for at least a month. Which is it, urgent or not?

Who knows?

Very frustrated and scared.
 

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