Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I thought it was my imagination yesterday, but today I am sure of it.
My eyes were actually open all the way when it kicked in! I had gotten so used to them being so hard to keep open and lifting my head to look out that I didn't realize it at first. But I went and looked in the mirror, and yep, they were open.
My endurance for ordinary tasks is better, such as climbing a couple of steps, walking around Walmart, etc. But, when it wears off, I can tell right away. The first thing to go is the lower lip. It starts hanging a little and shows my lower teeth and when I try to stop that it gets wiggly. Then the eyes start drooping again.
I guess my next question is: Does this mean that I for sure have MG? Or does any other disease respond to Mestinon? I never thought I would "want" to have a serious disease!!!
Not really. Just want to know how to treat it. Have already been dealing with it for a long time.
My eyes were actually open all the way when it kicked in! I had gotten so used to them being so hard to keep open and lifting my head to look out that I didn't realize it at first. But I went and looked in the mirror, and yep, they were open.
My endurance for ordinary tasks is better, such as climbing a couple of steps, walking around Walmart, etc. But, when it wears off, I can tell right away. The first thing to go is the lower lip. It starts hanging a little and shows my lower teeth and when I try to stop that it gets wiggly. Then the eyes start drooping again.
I guess my next question is: Does this mean that I for sure have MG? Or does any other disease respond to Mestinon? I never thought I would "want" to have a serious disease!!!
Not really. Just want to know how to treat it. Have already been dealing with it for a long time.
Mestinon is one the first things they give you to see if it helps and generally it is does, you most likely have MG. Have you gotten a diagnosis yet?
Cathy
Btw, if you look at the label for the mestinon it's not used for many things at all. I think the fact it works is fairly conclusive, but I'm no doc.
This does seem to be a very special group of people. I feel at home here already. Especially since I have not really been able to speak to anyone about my condition yet. I have told my daughter what I am being tested for, but I don't know if she really understands that much about what it really is and how much impact is has on life in general.
My neuro still wants to rule out other diseases, but he is fairly certain I have MG. I am glad he is being thorough, but I really would rather not have any more painful tests.
I am so thankful that I am getting some short term relief from some of the symptoms.
Linda
One of the best places to find a tons of information on MG is at this website: http://www.myasthenia.org/
Did they do the ice test on your eyes? The first test they did on me at the neuro's office was to put me in a room and made me lay down in a dark room with ice on my eyes for 15 minutes. If your eyes don't droop, than that is another sure sign you have MG.
Let us know when you get your diagnosis. I hope you don't have it, but it sure sounds like it.
Cathy
Given the symptoms you describe and the fact that Mestinon works, it looks pretty clear cut that it is MG. There is only one other even more obscure condition that effects just the bowels that mestinon helps, but apart from that I think it is always MG.
Believe me, its better to have MG than some of the other things that can casue the symptoms. When I was diagnosed my wife and I went out and celebrated because I had thought it was something much worst.
Gwyn
Noodle, I'm so glad mestinon is working for you. I'm sorry you are on the diagnosis ride but if your blood work is negative for known antibodies then you will have to endure the testing to rule out any other cause of your symptoms. I rode that ride to the finish line myself before being diagnosed with MG. Have you had an EMG?
The first step for me was also trying mestinon. It definitely helped but that did just lead to other testing. My neuro also told me it helped with other diseases but I never coulld get him to tell me WHAT other diseases. Thank you Gwyn for the info on other disease.
Cathi