Myasthenia Gravis

[livingwith]

In 1995 I was diagnosed with Myasthenia Gravis I was 15 years old. It all started when my tongue started feeling funny earlier in 1995. It began to get harder and harder for me to talk. I didn’t know why and I didn’t want to tell anyone either .My tongue just got heavy and I thought that it would just go away after a while. Well…I started having difficulties talking to people and answering the phone. No one was able to understand me due to the slurred speech I was developing. ...Read the full article

[marie_c]

Thank you so much for your article. My daughter is 15 and was diagnosed last year with Myasthenia Gravis. She is still having a tough time with it and her doctor at the childrens hospital in Indy are preparing to send her to Vanderbuilt Hospital in Nashville, TN because she continues to have so many crisis. Your story hit home with me because it was so familiar to my daughters. She takes mestinon 4 times a day as of right now and still struggles with doing any type of physical activities. She has the one eye that will droop all the way down her face and her tongue "feeling" swollen in her mouth and her spit where she can't even swallow it. We have had 4 trips to the ER since Dec. for breathing crisis. I will share your story with her because there just aren't many stories of kids her age that have had to deal with it. I am happy to hear you are doing good with it now and I hope to to have her on the same path :) Thanks again.

[ftaufer]

Hi, I was 14 when I was diagnosed with MG. I remember getting weak and not being able to brush my hair or walk on my own. My eye lids started to droop. I was at school one day walking down the stairs when I collapsed. My parents took me to the hospital where they did numerous tests and they couldn't find anything wrong for months. They sent me to hospitals in Oxford then London where they finally found out that I had MG. I had to be home schooled for a year because of my recovery time. I had my thymus removed and weened myself off the medication. I rarely have any problems. I sometimes get weak when it gets too hot, other than that I am very healthy. I am 36 now and have three chrildren, i had no problems during my pregnancies either.
It is scary going through it all, but it doesn't all have to be bad. It's going to be ok! It has been great to read everyones story. Thank you.