17 Years and Counting of Ocular MG Symptoms

Seventeen years ago just after I turned 40, I started experiencing symptoms of ocular MG that has never progressed to general. I'm seronegative, which led to a year between onset of symptoms and diagnosis. My only symptoms have been a droopy eyelid and double vision.

For the first 10 years, the double vision was controlled with Prednisone and Imuran. The double vision recurred intermittently, but always lasted only briefly after temporary increases in my Prednisone dosage.

Starting IVIG

At year 10, I started on infusions of IVIG, due to my doctor's concerns about my long term use of Prednisone. I then went through a very frustrating period of my insurance only approving IVIG when I was experiencing double vision, rather than allowing ongoing treatment to prevent that symptom.

I had several lengthy double vision outbreaks as a result. I'm talking about 6 weeks at a time when I had to either wear a patch over one eye to see normally or tilt my head back to see the world looking down (the only direction in which I wasn't seeing double).

I eventually won the insurance fight and have been receiving monthly IVIG treatment for about 3 years. I nevertheless had another 6 week return of double vision a year ago at a time I was receiving monthly IVIG treatment. It was the result of an experiment to see if I could drop the Prednisone entirely and rely only on IVIG. Six months in, the double vision came back and I went back on a relatively low dose of Prednisone.

Dealing with the side effects of Prednisone

Compared to generalized MG patients, I've had it fairly easy. The biggest impacts for me have been the lengthy double vision episodes I described above and many side effects of Prednisone. I've gained weight, had to go on blood pressure medication, and had bone density loss requiring more medication. Not as critical, but just as annoying is that my hair is thinning as a result of Prednisone too.

I sought out forums like this one immediately after my initial diagnosis, but fell away when things became manageable and routine. Now that I face new medication choices and other complications like insurance drama, I appreciate having a community like this as a resource.

But I met the person I would marry!

Something else happened 17 years ago within weeks of my first double vision experience. I met the person I'd eventually marry and remain with. I spoke about the mysterious double vision on our first date (I had to; it was affecting how I was walking down the street!) So at least I have something absolutely positive to associate with March of 2007!

- Kevin, Chicago