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...
Today they took out my feeding tube and put me on the regular floor. The doctor put me on a mechanically altered diet, which still requires chewing, the thing that causes me problems. Fortunately, I questioned it and got them to bring me purees. In the meantime i enjoyed my first meal in a few days and a glass of tea, which always makes me feel better.
I had been feeling not as well for most of the day before I was moved. I was worried that they were not getting my full dose of mestinon out of the crusher because it was both not as potent and not lasting as long. My next dose was due at six and didn't show up until six thirty on my new floor. The nurse came in and plopped down a half of a pill. She told me that was what was ordered.
I told her it had to be crushed because that was what brought me here was my inability to swallow chunky things.
Now since I had my meal and my tea I have been much improved, but now I am seriously terrified that it is just the tea that did it and when that wears off and there is not enough mestinon on board, I will crash. I really don't want to have to go through this again to prove a point.
At my worst I was unable to speak except through clenched teeth unable to move arms or legs, etc and totally at the mercy of whoever would help me. I did not even have the strength to press the call button so they gave me a soft squishy one. I was unable to turn over in the bed and had to be put on a bed pan. My first experience with any of this, so you see why I am reluctant to do it again. But I guess the doctors know more than me. He even told me today he was going to have a psychiatrist come by and see me to 'help me deal with the anxiety of being sick'.
I feel like because I have no positive tests, I am just a looney tunes. I will have another doctor tomorrow on this floor. Just hoping and praying I have a good night.
This has been so tough, as sometimes I question myself as to whether I am really sick since everything is negative. Please pray for me.......
I had been feeling not as well for most of the day before I was moved. I was worried that they were not getting my full dose of mestinon out of the crusher because it was both not as potent and not lasting as long. My next dose was due at six and didn't show up until six thirty on my new floor. The nurse came in and plopped down a half of a pill. She told me that was what was ordered.
I told her it had to be crushed because that was what brought me here was my inability to swallow chunky things.
Now since I had my meal and my tea I have been much improved, but now I am seriously terrified that it is just the tea that did it and when that wears off and there is not enough mestinon on board, I will crash. I really don't want to have to go through this again to prove a point.
At my worst I was unable to speak except through clenched teeth unable to move arms or legs, etc and totally at the mercy of whoever would help me. I did not even have the strength to press the call button so they gave me a soft squishy one. I was unable to turn over in the bed and had to be put on a bed pan. My first experience with any of this, so you see why I am reluctant to do it again. But I guess the doctors know more than me. He even told me today he was going to have a psychiatrist come by and see me to 'help me deal with the anxiety of being sick'.
I feel like because I have no positive tests, I am just a looney tunes. I will have another doctor tomorrow on this floor. Just hoping and praying I have a good night.
This has been so tough, as sometimes I question myself as to whether I am really sick since everything is negative. Please pray for me.......
I have been drinking ice water, but just keeping my mouth shut about it because otherwise I would be totally dehydrated.
Don't get me wrong, they are very good here. They just don't understand mg and how it works.
I talked to my nurse today and she asked me why I didn't just chop up the food. I said if I had the energy to do that, I would have to just leave it on the plate because I am too tired to eat it. I think she finally understood. She is calling the doctor to see if my diet can be changed. Haven't heard back yet on that. They are so worried that I am going to aspirated on liquids, which I have no problem with, but they don't care if I get a hunk of broccoli stuck in my neck!
I hate to ramble on and on but you guys understand what it is like. Thanks for being here for me. I am so glad I found this site before I got into this fix. At least when I was at my worst I was able to conserve energy by just keeping my eyes shut and laying completely still and try not to talk and try not to panic. I was so afraid at that point that I would lose my breathing, but because of everything I have learned on here I understood what I needed to do.
Hopefully you will see neuro in the morning. If you have toruble breathing tonight request a nurologist asap. If they say no, write it down on paper so you have documentation that you requested a neuro.
They have neuro on call for the emergency room so they should have one for you too.
Take care
Ann