My experience seeing double with myasthenia gravis
Since developing the symptom, I've learned my triggers and prevention methods
Are you seeing double?
I was. And I still do if I push myself to a certain level of weariness.
When I first experienced double vision, I thought that either my crappy vision was worsening (I’ve worn bifocals since I was 18) or that my new symptom, a droopy eyelid (ptosis) that began around 2016, was causing it. The ptosis prompted a visit to an ophthalmologist with Veterans Affairs, who gave me a working diagnosis of myasthenia gravis (MG).
My double vision turned out to be from neither my normal craptastic vision nor the eyelid droop, but from weakness in the ocular muscle itself. Some with MG only experience ocular symptoms, which is why there’s a form of MG called ocular myasthenia gravis.
The picture below is what double vision looks like for me. It can also seem as though objects and text are side by side, vertically stacked, or in a shadow, similar to what you might see with astigmatism.
This photo collage of self-portraits, Shawna says, demonstrates what she sometimes sees when she experiences double vision. (Graphic and photos by Shawna Barnes)
With double vision being a common symptom in many diseases and conditions, how can we know if it’s related to our MG?
After I posed this question to several providers, my neurologist summed it up best when he said that if we can cover one eye and the double vision goes away, it’s the MG-related muscle fatigue. If we can cover one eye and the double vision is still there, then the cause is something other than MG.
My life with double vision
Over the years I’ve been able to identify what triggers it. Reading a lot in a poorly lit room is one way to fatigue these ole eyeballs. Not taking regular screen breaks from my phone, tablet, or computer is another surefire way to cause the fatigue. As a website designer, not being able to see my screen clearly is kind of an issue.
I make several shifts to reduce these known triggers. I’ve learned, for instance, that it’s just as important to give my eyes a break as it is to rest my body. I’ve developed a work-rest cycle for my eyes that seems to be going well, as I’ve not had many days in a month when I see double.
My desk faces a window, so I often find myself gazing out at the trees, sky, or passing cars. While this habit might be a hindrance to some, it’s a methodical choice for me. Looking up from my computer monitor and out the window has greatly reduced my eye fatigue.
My desk is also set up to be ergonomically sound. The monitor is around 24 inches from my face (an arm’s length) and is set so I gaze downward for most work. I also invest in glasses that block the screens’ blue light. They’re a fairly new tool for symptom management, but I believe they’re helping me.
Do you experience double vision? What are some tips, tricks, or tools that you’ve found to help alleviate it? Please share your thoughts in the comments below.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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PHILIP L MIZELL
I agree with everything you said, as I have the diplopia as well. In addition, I have computer-specific glasses that have a wider field of vision for that 20-24 " viewing range.
Jerolyn Carroll
Could long term exposure to asbestos or Agent Orange cause Myascenthia Gravis?
Vee
Does the double vision like on that photo also affect your reading at the same time ? Or can you have double vision distance-wise and read a book OK?
Shawna Barnes
Hello Vee. For me, yes, the double vision also affects my ability to read when it occurs. - Shawna
laura bradley
Has anyone been diagnosed with FND and found it was this?
Robin Matlock
I also have double vision, which is how I came to learn I had MG. For about a year, I did just about everything with one eye closed at the time. Lately though it has greatly improved and I only experience some occasional blurry vision. I just rest my eyes when either occurs, sometimes with a cold compress. I’m glad I’m not alone.
Jacquie
My double vision while playing tennis is what caused me to go to a doctor and discover I do have MG.. Whenever I am tired, the double vision kicks in. It’s so annoying. :( I get a bit of a panic attack driving the car while one eye is covered. I feel like I can see, but glancing at the mirrors and rearview mirror throws me off. I don’t feel the mastodon has helped at all. I just rest and take the rest of the day off when that happens. :((
Shauna
Shawna, I have had myasthenia gravis since I was a teenager, & my eyes were the most visible of my diagnosis, I mean ptosis has been my best friend lol! I honestly live with double vision almost 24/7 for the last 34 years and I agree that closing my eyes for a few seconds brings objects closer together but never is it completely gone. Using one eye for my vision is truly the only thing that makes the double vision go away!!!
Anne Terry
I began my MG with ptosis and double vision. After 3 back to back crises, I went from ocular to generalized MG. Until I began infusions with Ultomiris, my double vision continued. But the Ultomiris took away almost 80% of the dbl vision. I am also taking Mestinon 3 times a day. I do have trouble with high anxiety and panic attacks if I can’t catch my breath, but Buspirone 3 times a day help keep anxiety in check.