Sudden vision change

This weekend my distance vision got much worse. I saw the optometrist who said this is not a normal vision change due to the severity and suddenness of the change. He suspected diabetes, but so far my blood sugars are normal. My lenses and retinas look fine. Does anybody have any ideas about what might be causing this? I go for an MRI May 8th. So far my doctor is baffled since I don't have any other neuological deficits. Thanks.

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This has happened twice to me over the past few years. I have been wearing soft contacts since I was 14 (I'm 55 now) and I have been seeing the same optometrist for about 12 years who is familiar with EDS. He could not explain the vision changes either. One time it was one eye and the next time it was the other eye. He changed my prescriptions appropriately and everything seems okay now. I also see a neurologist for my migraines and she mentioned that my pupils react differently to the light than "other people". She stated that she was quite sure it was due to EDS. I have a family history of diabetes, so I have my fasting blood sugar checked regularly, but I eat such a healthy diet and it's always been perfect, so I don't think the vision changes are related to that.
Interesting to hear someone else is experiencing the same. Hope all works out well with you!!

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EDS is a collagen disorder, and a lot of the eye is made of collagen, so problems are pretty common, although speaking from my own experience, alarming. From the EDNF Ophthalmology Medical Resource Guide (available at https://netforum.avectra.com/eweb/DynamicPage.aspx?Site=ednf&WebCode=Custom Page):

"Considering the sclera and cornea are mostly collagen, patients with EDS or any collagen-related disorder should be carefully watched for ocular disease. Ophthalmological abnormalities in EDS include but are not limited to myopia, retinal detachment and glaucoma. Some of these can be vision-threatening. Any disturbance in vision or eye health should be evaluated and explained, particularly in the presence of collagen disorders. Patients with retinal change should have follow-up visits every six months, and patients who report floaters should be evaluated every three months. Anyone experiencing flashes of light should immediately get in touch with their eye-care physician."

"These problems are not necessarily related to EDS, but they require a more intense evaluation in someone with EDS:
• Blurred vision that comes and goes; seeing double;
• Complete/almost complete vision loss in one eye lasting for minutes; migraine auras;
• Dry eyes, light sensitivity, tunnel vision, floaters."

"SEEK EMERGENCY HELP IF ANY OF THESE OCCUR:
• Double vision that starts suddenly, especially if vertical;
• Flashes of light (with or without floaters);
• Pain, redness or discharge;
• Curtain coming up over vision;
• Frontal headache in which patient 'hears pulse in the temple';
• Sudden change in vision."

So yes, it's something to be worried about and get examined for, but once you've been examined if there are no indicators of something serious happening, essentially all you can do is adapt to it. In the past couple years, I've had quite a few problems with vision. They can be annoying/disturbing as anything else with EDS, and they're either temporary and/or I adapt. So far, at least.

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thanks, EDSerMark, for the link to the eye info. I had a sudden vision change several months ago. A very large floater appeared suddenly overnight. I was having trouble seeing out of my left eye. I went asap to my doctor who had no explanation but was shocked. Again thanks for the info.

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Hi--
So sorry you've experienced this.
Our son's EDS was only diagnosed after rapid vision loss in one eye. His problem is called Keratoconus, and is directly related to the collagen defect, and was diagnosed after at least 3 different MD visits. The cornea, made of collagen, is not as stable as it should be, and its shape becomes progressively conical. (Think Saturday Night Live Coneheads.) Until recently it could only be treated with hard contact lenses and corneal transplants, but newer treatments are becoming more available. Check out www.nkcf.org, or write me back if you'd like more information.

Best of luck to you,
Ticie

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I actually had 20/20 vision until I was in my late 40's and began having age-related deterioration of close-up vision (reading, etc.). Lately, though, I've developed cataracts (I'm 58) and am also starting to see superimposed pinkish patterns on white garments that I happen to be folding (!) if in dim light. I need to see an opthamologist, I think (the optometrist attributed this to my cataracts which apparently aren't operable yet).

One EDS-related eye condition I apparently have, and didn't know about until a knowledgeable orthopedic surgeon happened to point it out to me, is "blue schlera." That is, the white part of my eyes has a very slight bluish tint. I'm wondering if anyone else has ever happened to be told they have that.

It's hard, isn't it, not knowing whether any particular medical change or condition is actually EDS-related or not. I'm beginning to realize just how much both my body and my particular array of health issues are indeed EDS-related.

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My vision has been doing this for a long time now. Even as a kid, it was noted that my astigmatism could shift radically in a short amount of time. That's just a small irregularity on the lens of your eye that bends light as it passes through the lense. If you wear glasses, you can kind of adjust and not notice it because glasses are made to correct for astigmatism precisely where it is when the glass is ground. Contact lenses don't work that way. I had this going on long before the EDS dx, but it makes good sense to me now. A radical shift in somebody with EDS kind of makes sense. Everything moves further faster with us that with regular people. It's kind of funny to picture your eyeballs rolling around like that, though.

Also prior to the EDS dx, I had lasik done on one eye. When I see well, I can drive without glasses now. I only need them for fine print. Near as I can tell, it gave me an improvement and caused no damage at all despite warnings some people make about getting the procedure done. And my previous astigmatism is no longer an issue. So I'm not terribly concerned with all the cautions about that. They check your eyes out thoroughy before doing the surgery. If there was anything weird going on there, I think it would be noticed. (I've done a whole lot of things we supposedly 'shouldn't' do. Some were spot on, some worked out just fine. So thank goodness we can talk to each other these days.)

I should note that I also have a dx of CFIDS/ME, FM, and chronic exposure to neurotoxins which can sit on the optic nerve. So I have low visual contrast sensitivity. And my vision changes constantly. Some days, it's blurry, others clear. That's completely ordinary for people with those dx's, with or without EDS. When it's clear, it's just as clear as ever. I have heard this from all kinds of other patients, and it's well-documented in the literature. No one seems to know why it happens, but a connection between EDS and CFIDS/ME has been known for years now.

There is yet another issue. I was exposed to neurotoxins. These particular toxins tend to sit on the optic nerve, and can be tested for very easily. They cause you to have low visual contrast sensitivity. I haven't passed that test in years because, even though the exposures have stopped, the toxins are chemically stable and haven't been able to be removed from my system.

One other problem for me is scotopic sensitivity - but that's not really an eye problem. It's a brain problem. When light in certain frequencies passes through my eye and those signals in turn hit my brain, it turns on all kinds of pain. This is similar to what happens to to epileptics when they era exposed to certain lighting. This may explain the changing vision problems, but it's seldom investigated. I lucked out and had a doctor who was familiar with it and tested for it.

Bottom line - yes! My vision does all kinds of funky things. It sounds like I'm nearly blind...but I'm not. I do all the stuff anyone else does, except trying to read small print. If you intend to see an ophthamologist, make sure they know all your medical conditions and meds whether they ask or not, and be prepared to spell 'Ehlers-Danlos' for them. They just don't see us very often and may have to dig into the literature themselves. There's not a whole lot out there, so you may have to educate them quite a bit yourself.

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My vision has dramatically improved! It's not back to normal yet, but it's getting closer. And my vision fluctuates during the day. I see the optometrist again on Friday, and I can't wait to see what my vision measures. Hopefully my vision will stabilize soon so I can get my glasses corrected for whatever my new prescription ends up being. Thanks for all of your responses!

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interesting... I think I gotta go see a Dr.... I have always had great vision my whole life until a sudden worsening of symptoms in Aug of last year. I had several episodes of blurry vision. It would range from just a little fuzzy when looking in the distance to it looking as if I had water poured into my eyes. It would come and go for a couple months then completely stopped, but then I just experienced it again last week...

I was just recently given the EDS III dx

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Same here. My eyes were fine until I was 17 then they got progressively worse until I was 21 when I got lasik eye surgery. The doc was awesome and I had 20/20 for a few years. Unfortunately, my eyes continued to get worse, even after lasik and now I wear contacts again. I was just at the eye doc and my eyes are getting worse at a faster rate now. I am talking a few days. The doc said I need to make sure I am looking up periodically when doing things up close. Otherwise it will keep getting worse. I also noticed that I have some trouble now reading. I am 27 and the doc suggested reading glasses but only when wearing the contacts to give my eyes a break. Hope this helps :)

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