How did you get diagnosed? Tell me your story.

  • How did you get diagnosed? Tell me your story.
  • I first started experiencing symptoms at the age of two, it was actually my birthday. Though I may not remember this, my mom told me the story a lot. It was my birthday and I was doing something with my mom, and she poked in the eye with her nail. The next day was at my grandmas and my grandma said that that my eye look droopy my mom thought nothing of it until a week later when instead of my eye going back to normal my other eye got droopy. I went from being a normal walking 2yo to taking two steps and falling within a week. From then on I was in and out of hospitals for almost a year, though the couldn’t figure out what I had They thought I had brain disorders, muscle disorders, nerve disorders though every test they took came out negative. Then one day I was in the hospital and my mom was at work, and she was crying in the bathroom due to all the stress and a friend of hers walks in and asks her what’s wrong. My mom tells her the story of how I was sick but nobody knew what it was, and her friend pretty much told her to take things into her own hands. So my mom did, and she did research and actually ended up diagnosing me. My mom went to my doctor and told her “I think my daughter has myasthenia gravis, here is my research please test her for it.” And the doctor quickly dismissed it saying that MG only occurred in the elderly. Things got so bad to the point were I couldn’t go in cars because I would stop breathing and my face would turn blue. The next time I was being rushed to the hospital I stopped breathing while I was in the abulance I was crying and that caused me to be more weak, apparently I passed out and they took me in through the back doors were they take the people who just got shot. They had me next to the cancer kids. My mom then talked to the head doctor there saying “my kid is sick and nobody knows what she has, I think she has MG, please believe me.” And that head doctor then said “I will give her this medication and if she has MG then she will gradually get better and we will know what she has, but if it doesn’t work, it won’t hurt her but we will keep trying to figure out what she has.” Gladly they gave me the medicine and I woke up, but, I had those tubes down my throat were they but the bags in your lungs to keep you breathing, and apparently when I woke up I ripped the bags out of my throat almost killing myself. All the lights and sirens went off thinking I had stopped breathing. I then got on a road to recovery and my mom dropped the original doctor who wouldn’t test me for MG. I took a large amount of steroids every day until I got stable and I had all the bad side effects. By the time I was 3ish I was better and taking steroids, by the time I was 4 I was stable and taking Mestinon. I am now almost 13 and have been stable ever since. Though taking medicine 5 times a day isn’t fun but you gotta do what you gotta do. I am one of the few people who have it from head to toe, and was diagnosed at such a young age. I still have the scar from when they did the surgery on me to remove my thymus gland. I am now almost 13 and play volleyball and basketball and sometimes softball. I’m glad that the odds turned out in my favor and I am living to this day. Thank you for listening to my story.

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  • #10705

    Thank you for sharing your story! I am 44 and just got diagnosed. Stated medication 2 weeks ago and waiting for my double vision to get better. Stay strong!

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