I Found a Neurologist Who Gives Me Hope

A broken promise can often lead to immense disappointment. For someone with myasthenia gravis (MG), a failing immunosuppressive medication can easily lead to a broken heart.

Immunosuppressive medications combat the autoimmune nature of MG. Unfortunately, I have refractory seronegative MG. Refractory means that either I do not respond to treatment or the side effects of said treatment are too severe to justify long-term use. Seronegative means that specialists haven’t identified the antibody responsible for disrupting the communication between my nerves and muscles.

In other words, specialists don’t know what is responsible for my MG.

It took four years of searching, including 18 months of chemotherapy (cyclophosphamide), to find the right immunosuppressive medication for me. You can imagine my surprise and delight when my condition improved a few months after I started a new immunosuppressive medication called cyclosporine. For the first time, my medication was working, which meant fewer hospitalizations, no more chemotherapy, and easier breathing. I was ready to take on the world!

Sure, I was experiencing some side effects, but that was a small price to pay for better health in general. The side effects were worth it because I had something that I hadn’t had in a while: hope.

(Photo by Retha De Wet)

After about 18 months of cyclosporine, my symptoms started to flare again. My voice was soft and breathy, my legs were wobbly, and my neck was floppy.

It was happening again.

The panic sank in.

I tried to make an appointment with my neurologist, a renowned professor in neurology. But the earliest appointment I could get was in five months, which I knew would be too late if I were relapsing.

Over the next month, I deteriorated seriously and rapidly. Even my breathing was severely affected. My mother decided to contact my neurologist from my hometown. When she heard about my troubles, she urged me to come to her hospital. I was admitted to the ICU as soon as she saw me.

(Photo by Retha De Wet)

That was when I received my first sessions of plasmapheresis. The initial session was terrible and filled with severe nausea and vomiting. However, after the second and third sessions, I began to improve.

Even better, I found something that I had lost once again: hope.

Following that hospitalization, I returned to the neurologist, who was a two-hour flight away. My MG is not stable, and I am not functioning optimally, but I can rest assured that my neurologist will take care of me if I experience another MG crisis.

Despite being admitted to the ICU twice in the past four months, my neurologist made sure that I continued my studies. I am proud to say that I have officially completed my degree and am a speech-language pathologist.

(Photo by Retha De Wet)

I have decided to relocate to my hometown next year so I can see a neurologist who gives me hope. I don’t know what the future of my treatment holds, but I know that my neurologist will ensure that my quality of life is considered every step of the way.

Never stop fighting. Life is beautiful.

***

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.