Disoriented Vision: My Struggle with MG

In January 2023, my life changed. I started experiencing frequent falls, urinary incontinence, and a sense of disorientation. Eventually, I realized much of the disorientation was due to my constant struggle to make my eyes work together. I was experiencing double vision, and it became incredibly exhausting, making even simple tasks feel overwhelming. The constant effort to focus left me drained both physically and mentally, and I found it difficult to maintain my usual routine.

The long road to MG diagnosis

Four years ago, I had mild double vision. I underwent bloodwork and an EMG, both of which came back normal. I also saw a neuro-ophthalmologist who diagnosed me with divergence insufficiency. That was likely the beginning of Ocular Myasthenia Gravis (MG), but I am triple seronegative, and a single fiber EMG was never performed to rule out MG. I had a 4 diopter deviation at that time, but by January 2023, the deviation had increased to 14-16 diopters.

The strain of progression

Up until six weeks ago, my double vision was controlled with the maximum dose of pyridostigmine. However, I feel like I’ve progressed to generalized MG. I often think I’m going to have a productive day, only to find that just a couple of hours later, I need to lay down or I’ll physically vomit. Lying down for 20-30 minutes helps reset me, but my double vision has returned, leaving me confused and exhausted.

Seeking answers and support

I’m scheduled to see a new neuromuscular neurologist in four days. I also have Common Variable Immune Deficiency and am receiving subcutaneous IgG treatments, but immunosuppressants are not an option for me.

I’m seeking professional help, as well as support from those who truly understand what I’m going through. Having people who truly understand my struggles will make it easier to face each day with hope and strength.