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Coping With Myasthenia Gravis

This section is a place to share stories about Coping With Myasthenia Gravis

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18 and full of life
by: Jess on Thu, Mar 20 2008
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I was diagnosed with MG in February 2007. I was 17 years old. As a younger teenager I had always had some weakness but doctors told me it was because I was growing and was put on iron tablets more than once.

In grade 11 I started a new high school and joined the cheerleading team. I was a third because I am very tall and therefore can’t be lifted into the air. It was then I started getting annoyed with being weak, but I figured it was because I was so skinny and so I worked out more trying to gain muscle.

By summer 2006 I started noticing some major weakness. Then it happened I was driving to work one day and I couldn’t see the road properly, I had double vision. I had to pull because I had never experienced anything like it. My parents sent me to an optometrist, but nothing was wrong with my eyes.

When I went and spoke with my family doctor she decided to send me to a neurologist. By the time I got in to see one summer was over and I was in my final year of highschool and back to cheerleading.

The neurologist decided to test me for things like MS and diabetes. I finally had to quite cheerleading because I wasn’t able to lift the girls anymore, and I was frankly quite embarrassed because my older sister was an amazing cheerleader.

In November I went for an MRI but they couldn’t find what they were looking for… so I still went undiagnosed. It wasn’t until late January when I started my biology class that I knew what was wrong with me. We were learning about the thymus gland and my teacher spoke briefly about myasthenia gravis it was at that point I knew. I made an appointment with the neurologist and got tested, and instantly after some blood work, a EMG, and CT scan I was diagnosed.

In March I was put on Mestinon and CellCept. I thought I was going to get better and be one of the people that never really had to deal with the major problems but I was wrong. I had repeated episodes of horrible double vision and problems speaking and swallowing.

I am now 18 years old finishing up my first year of university and next week I am going to start intravenous immunoglobulin . I want to be a doctor one day and I plan to do it. Yes I have myasthenia gravis, and yes I have complications, and relapses. I unable to do some of thing fun things my friends can do, and some days I can’t reach my hands above head to to tie my hair in a pony tail, but I won’t let it stop me.

People always tell me that you need your family to support you through things like this but I believe that all you need is one good person in your life and your own drive. My family doesn’t want to think about what I have to go through, and often forget that I’m not being lazy that I have a disease. But I have one person who loves me and is always there for me, and he helps see that I can be whatever and whoever I want to be and I will fight this!


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Comments
  1. Mon, Nov 17 2008
    I am so sorry that your family does not understand the seriousness of your illness. I watch my 21 year old son everyday. He is full of so much drive a...Read
  2. Fri, Apr 11 2008
    hey thanks,You know this is the first time that I finally hear about someone my age that has the desease that I have,Alot of people dont understand,Pe...Read

March 2008

  • 18 and full of life - by Jess - (Thu, Mar 20 2008)
    I was diagnosed with MG in February 2007. I was 17 years old. As a younger teenager I had always had some weakness but doctors told me it was because I was growing and was put on iron tablets more than once. [more..]
  • the unknown disease - by deedee - (Wed, Mar 19 2008)
    Why do most people,including doctors suddenly become defensive to the word MG? When I try to explain it,people act like I am crazy or because they haven’t heard of it then it must not exist. [more..]
  • My Story - by Sarah - (Wed, Mar 12 2008)
    I initially had leg weakness off and on, nothing I was alarmed about. January 2004, 33 years old, I started having double vision, so I went to the eye doctor. Since then, I’ve had to wear glasses with prism lenses, so my eyes don’t fatigue as quickly. [more..]
  • Myasthenic Falls at Officers feet … - by MaryAnn - (Sun, Mar 02 2008)
    (I had been gradually worsening due to stress …. felt extreme weakness and had fallen)…. It terrifies me to live in a world where I may fall, shake, be extremely weak, unable to speak, swallow, have double vision, or worse … all because of my disease, Myasthenia Gravis and though I explain it, my symptoms may be perceived as “crazy” or “drunk” and I may be denied care. Anyone with a rare disability could die as a result of such ignorance! [more..]

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