I was just diagnosed with scleraderma (limited) last week and I have been reading as much as I can about it. I came across your page on the Sclero website, is it true that you answer questions about vision and scleraderma? I am very confused because I have had vision problems which have strongly impacted my life and yet when I saw an opthalmalogist a few months ago, he did not take my problems seriously and said there was nothing wrong with the structure of my eye so there was nothing wrong. However, this was before it was known I have scleraderma. Is it possible to have vision changes caused by scleraderma that do not show up in the structure of the eye?
I have a real hard time describing my vision but I will try and I hope you will bear with me. My neurologist does not have the patience to hear me out and does not seem to have any answers. He referred me to an opthalmologist who also did not really listen to me, just examined my eyes and said "nothing is structurally wrong with them." Except that i have evidence of severe dryness.
The eye problems began a couple years ago. My eyes are very dry and always red. I keep eye drops always with me. Even during the night I need to use them. I use refresh and genteal gel.
When there is a source of bright light, I find it very difficult to see; the light is blinding and the other areas are just shadow and I lose the details. I have fumbled around trying to open the wrong side of a sliding door trying to get out of the sunlight at a friend's house, for instance, because I could not see the details of the door, which was in the shade.
I am super sensitive to light. I keep my shades shut all the time, I have trouble looking at any source of light, even the tv or a computer screen, I have to wear sunglasses for both. I've had to replace all the light bulbs in my home with 25 watt unless they are on dimmers I can keep low. Often it comes to the point where it is not just discomfort but extreme pain when I see any source of light and it brings on the worst eye pain, headache and nausea and I have to go to bed and shut out all light.
Although I have glasses that correct my vision (and, technically, my vision is not bad), there is something else that is hard to describe- it is like when you have looked at a bright light and then look away and you are sort of blinded. I have suffered from migraines for many years and this reminds me of the blindness I get just before a migraine aura except it is always there. I run into things, walk into people at the store, get confused driving. Many times I open the wrong can of something because I am not clearly seeing the label. Many frustrating things happen daily.
Visually, I always have a sense of areas, or lines, of light and shadow, moving around and flickering in front of my vision like I am looking through something hindering my vision. I do have some floaters but apparently not enough to explain this phenomenon. My vision itself, it seems like I have "noise" if you are familiar with what noise is. I've used graphics programs like photoshop for years and there is a setting where you can "add noise" to a photo. This is how my vison looks but all of the tiny dots also to be blinking or flickering at different rates.
It's very difficult to read, I feel like I am trying to read by a strobe light while the letters are moving around and changing sizes in front of me. When I try to focus on something small like print, I become aware that my vision is sort of flickering, as if the 'refresh rate' on my eyes' screen is too slow, if that makes any sense. I had to stop using any power tools because the tool moves faster than my vision refreshes and it's like it has suddenly jumped ahead of where I was focused on. You wouldn't notice this if you weren't doing something that exacting probably. I used to love to read and now I can only skim things and try not to focus too hard or my eyes get very strained and I get an awful headache. The more I strain my eyes, the more blind spots I get.
When my eyes get tired,the blind spots grow worse and worse and then it triggers a migraine aura, the zig-zag prism looking sort of thing. This usually lasts about 45 minutes but I often do not get a headache afterward or just a minor one. It's not unusual for this to happen more than once a day, it just depends if I keep pushing to use my eyes or rest them. I have suffered from migraines for 25 yrs but only started getting the visual aura a few years ago.
I also have funny things that I see when my eyes are closed. Blinking, flickering lines of light and shadow. It can be all swirly like a Van Gogh painting. The last time my stomach got really bad I was seeing the most vivid moving patterns when my eyes were closed, it made me dizzy.
How I came to be diagnosed with scleroderma. A long road. I am 54.
2 yrs ago, a doctor felt strongly I had scleroderma. I had leg pain, constant nausea, loss of appetite, weight loss, fatigue, weakness, joint pain. She referred me to a rheumatologist but he said no because my bloodwork did not show inflammation (it still doesn't). He said "fibromyalgia." However, after that I developed extreme pain, swelling and stiffness in my feet and several months later, in my hands. My hands are tighter, when I flatten them out it feels they will tear. My toes also. The tightness in my feet has moved up my ankles and lower legs. I feel like I have no padding in my feet and like I have tendonitis in every tendon in there.
My podiatrist sent me to an arthritis clinic, I saw a very thorough and sharp doctor and he did tests I have never been given before, for antibodies. I was positive for limited scleraderma. He asked me about so many things no one has asked before, like 'have you noticed your scalp has been tighter?' yes, it is so tight that it makes things sound funny in my ears, like when I chew, and my hair stylist has remarked several times lately that my scalp is unusually tight. Many things like that, particularly the digestive problems. I have constant nausea and it is very difficult to eat, I am down to 115 lbs. I believe I have felt the pseudo blockages I am reading about. I have been to the urgent care with this before and they say 'gastro-enteritis'.
One thing I have not read about is that my sense of smell has also changed. Many things just have a strong garlic smell to me now.
I am sorry this is so long! It is just so amazing to have someone to talk to about this who understands. I hope I have not taken too much of your time! Thank you so much.
Posted by webmaster on behalf of Lisa