My MG history

May 26, 2015

I was diagnosed with Myasthenia Gravis when I was 10 years old after a few months of staying in hospitals and went through loads of test including CT scan, x-ray, MRI, bone marrow test, blood test, etc.

A year before I was diagnosed with MG in 1998, I have chronic urticaria (hives) that come and go away within a few days/weeks. My whole body were itchy, swollen and it was very uncomfortable to do anything. That was my very first symptoms telling that there is something wrong with my body. 

I started to become easily exhausted and began slouching, and I remember clearly the day my eyes began to drop and I can't see properly. After I have been diagnosed with MG, I live my life with drugs support and my life living with myasthenia gravis was quite manageable I must say. Honestly, the first few years were horrible, I still can't accept that there was no cure and I have to depend on drugs every 4 hours but life goes on and I became used to it. 

When I was 16 years old my shoulder became very weak to the point it hurts to comb and tie my hair. My doctor put me on steroid and it was okay at the beginning but then the side effects started to overpower the benefits. I stopped taking steroid slowly when my eyesight became worse, I can't control the movement of my eyeball, I have moon face, gained weight, stretch marks, upper respiratory tract infection(URTI), brain fog, and frequent mood swings.

It was difficult to smile but who cares, I choked on water but I can handle it, I have difficulty breathing, I can't open my eyes but it's okay. My body was tired all the time and I can't get up from my bed for days but I am fine with it until the day I find myself flat on the footpath. Even though I always have a hard time lifting my legs up I still can control it and avoid myself from falling. But when my legs failed in public and I can't control it and I have a hard time lifting myself up, I knew I had to do something. I am not very happy to be put back on steroid and I don't want to end up unable to do anything on my own. I don't want to wait till the day that I can't walk anymore.

I always remind myself that I am still young and strong, I don't want to spend my life going to the hospital and depends on drugs for the rest of my life. In 2009 I began my own research about MG seriously and in May 2010 while I was still in college I stopped taking all my drugs completely. It was not easy, I was afraid, have relapse over and over again but I was keen on healing myself. 

After stopping all my medication my urticaria came back, I struggle with systemic candidiasis, and all my MG symptoms became worse. In 2012 after I graduated from college, I continue my journey on healing myself and never stop my research about MG. I have successfully overcome most of my MG symptoms but still struggles with ocular MG where my blurred double vision makes it hard for me to drive. So far, I am completely off drugs and live my life normally.

Image credit: Jasica, Pixabay

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  1. The Myasthenia Gravis reaches its extreme severity when the person affected is not resting because it doesn’t cause any harm when a person is at rest.


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