In the past few months I started noticing occasional double vision late at night, usually while playing Words on the phone while in bed preparing to sleep. I'd gotten a new, stronger prescription for my glasses last fall and I put it down to that, because I could shift the glasses around and the double vision would minimize or disappear.

I'd also noticed my right eyelid felt a bit puffy in the morning sometimes. This eventually turned into a drooping eyelid (ptosis) on one side -- and the double vision was getting more frequent, seeming exacerbated by the droop. WTF?

Wondering if it might just be eyestrain (too much screen time), I scheduled a checkup. I also started Googling my symptoms, and yikes! Was I having a stroke? Some kind of palsy? Going blind? Pretty quickly I narrowed it down to "ocular myasthenia gravis" -- an immune-system disorder in which antibodies block the ability of muscles to receive neural signals, resulting in muscle weakness. The effects of OMG frequently show up first in the eyelid muscle because it's one of the body's weakest muscles. The more I read about the full-blown form of myasthenia gravis (which you can do here and here), I was both reassured and worried. The cause is unclear and there is no cure, only symptomatic treatment, though it sometimes spontaneously goes on remission, often for long periods of time. In many patients, it never goes past the ocular form (which can have associated head and neck issues, as described below).

The eye doc said my eyes checked out fine and she suspected OMG. She referred me to an eye specialist in town at Eye Associates (I have to say I was not impressed with the manner of Dr. Warner there) who also said it looked like OMG. I was in turn referred to a neuro-opthalmologist, Dr. Maitland, who runs a "balance disorders clinic" and also teaches at FSU College of Medicine.

The week I had to wait for that appointment was the worst: ignorance and scary/frustrating symptoms. Maitland and his staff were professional and thorough, basically checking me for rapid muscle fatigue in the eye muscles as well as arms and legs. He confirmed OMG and scheduled me for a CT scan and blood work to be sure. The followup was almost 4 weeks later, though!

At its worst (so far), the double vision made it nearly impossible to drive more than an hour at a time, and reading was also difficult. The double vision causes depth perception problems, which gave me mild vertigo a few times.

Then I started learning several coping mechanisms:

Squinting one eye shut, covering it with one hand, or wearing a piratey eye patch eliminates the double vision. Tilting my head also does so when it's minor. A square of scotch tape over one lens of the glasses eliminates the second image while permitting peripheral vision, which makes it a lot more pleasant walking around. Strong sunlight exacerbated the problem so I was careful to wear shades all the time outdoors. Sometimes just going without glasses altogether was a relief because it minimized the apparent double vision. All of these can make a huge difference in comfort, though some nights I was so happy to get in bed and close my eyes. There's no pain or discomfort besides occasional irritated eyes or stress headaches.

I've had some very minor issues with difficulty swallowing and slurred speech, which are common symptoms. I've heard the phrase "difficulty swallowing" before and it always sounded ominous, but in my case it's just that I may need an extra sip of water to wash things down. I have noticed very slight slurring/lisping (sibilants lose their edge) but no one else has. It gave me a scare last Thursday when I was delivering a workshop and found my articulatory speech mechanism felt like it was gumming up, but I got through fine. Knowing this is a possibility, I'm better prepared.

And actually in the past two to three weeks the symptoms have abated significantly. Driving is not a problem (I drove to Opelika and back three weeks ago with very little discomfort, whereas two weeks prior to that I could only do about an hour -- squinting and tilting my head the whole time -- during a drive to Tampa). The double vision is much less dramatic and happens much less often.

I finally had the followup with Maitland and he said the tests ruled out a tumor on the thymus, a gland under your breastbone that can sometimes be the culprit. That's good news in that I won't need surgery, but it rules out a simple solution. (And of course the CT scan revealed gallstones and a kidney cyst that I'll need to follow up on, but nothing urgent.) He prescribed meds I can take before things like workshops or long drives that should reduce the symptoms -- we'll see how that goes.

I'm cautiously optimistic. He wants me back in 6 months for another scan. Meanwhile I've developed a full repertoire of Popeye jokes, thought the "squinky eye" is much less of an issue than it was. Either my symptoms have at least temporarily eased up or I'm learning better how to cope. Or both. I recorded some videos at work today and got through multiple takes of some long scripts with no probs.

This was pretty scary at first, especially not knowing what was going on. I'm sharing this despite the TMI factor because you may know someone with similar symptoms or might get them one day yourself, and I hope this will reduce the anxiety if that ever happens. The online forums for OMG sufferers are a godsend, by the way.

So, I yam what I yam and that's all for now. Life goes on!


Unknown said...

ahh I love how honest your blog is in hopes to helping others...do you get headaches a lot?

JS Clark said...

Thanks, Kendra. I was getting eyestrain headaches at first but not lately. The symptoms have really subsided, for which I'm grateful.