Coping With Myasthenia Gravis

I was diagnosed with MG in July of 2006. I am 29 years old and have two young sons. I have been married to my wonderful husband for 9 years.
My symptoms started out as little things. I just did not have as much energy as I did before. I was not as strong as I once was. I felt sleepy more often. I have always had trouble with my sugar so I thought that I just needed to eat healthier.

Before long, things started becoming more noticable. I stepped on a toy in my son’s room and hopped for a second. The leg that I was hopping on gave out and I fell to the ground. My youngest son would climb into bed with me during the night. The next morning when the alarm would go off, I could not lift myself up with my arms to get out of bed. I literally had to roll my body over my three year old’s to get out of bed. I started having trouble holding things. If I was using my fingers to grip, they would lose strength and I would be unable to hold things. The silliest thing was that I had trouble putting my bra on. The muscle that I used to reach behind me barely worked. It would take me forever to just get it fastened. I am a college student and I had to drive over an hour to and from school. Every night on the way home I would get so tired that I felt like my eyes were closing. I had no idea that they actually were. There were so many other little things, but I just did not realize that they were all connected.

I decided that maybe glasses would help me be able to drive home easier. I had an eye exam and the doctor said that my vision was perfect, but that I had trouble maintaining focus. He prescribed glasses and I went home. That evening, my right eye closed and would not open. I had overused it during my eye exam. I decided then that there was something bigger wrong with my eye and went to see my GP. He immediately felt that it was neurological and reffered me to a neurologist.

The next week I went to see him. After a quick exam, he said that he thought it was Myasthenia Gravis. I had never even heard of it and made him repeat the name several times so I could pronounce it. We did the blood work that day along with the EMG and SFEMG. He said that the tests supported his diagnosis of MG but he was going to wait until the blood work returned to make an official diagnosis. He sent me home with Mestinon, which has become my new best friend. My eye opened for the first time in over a week.
My neuro also felt that I needed to have my thmus removed. I had a full sternotomy thymectomy in Sept. 2006. The surgery was not easy, but it was not as bad as I expected.
I am now on 60mg Mestinon 3 times daily. I started 10mg Prednisone on alternate days in December, but am now up to 40mg on alternate days. My symptoms are better, but are not quite controlled yet. I have faith that eventually I will be symptom free.

I have found a wonderful support group in the MGA of the UK website. They have a forum where you can post questions and concerns and others with MG respond. It is very well set up and is just the most wonderful place in the world. I would suggest everyone with MG at least visit and see what it is about. The website is www.mgauk.org. On the left side of the screen is a link for the forum. Good luck.