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.......
Annette
We understand what you are going through. Nobody else really can.
With you all the way,
TJ
I have a little Mestinon trick I've been using lately when I can't swallow it right, maybe it will help you or give you an idea of something to try. I chew my pill with a small vanilla cookie and let it all get moist in my mouth before swallowing so there aren't any chunks. The cookie hides the bitter taste of the pill wonderfully. Maybe you could get your full dose with a trick like that? I know my nurse looked at me funny when I kept licking the powder out of the pill cup, haha, but I didn't want to miss a grain of my pill!
So glad you're not alone there, praying for you.
XXXXXXXXXXXX
Calmday
#1 the anxiety is normal for us. When someone understands they will know that. Those that don't understand ...don't know that bing like you are creates anxiety.
I was exactly where you are.....exactly....so
A white board can help. You can write instead of talking.
Relaxzation tapes helped me to learn to calm muscles from the tension from dealing with all the "stuff"
#2 You know your body.....insist on the mestinon as you need it. I remember once I got a packaged mestinon dose that was too much. They practally told me I was nuts....well I was right.
#3 somee thought I was crazy too......we aren't ...they just don't understand our illness.
#4 are you under the care of a specialist for MG.......if not you best find one.....
Have a good day.....you will be ok.....do not let them cut any mestinon .....I was up to 90 every 4 hours. Do you have a husband or friend or parent to be your advocate......you need MG specialist or at least neuromuscular specialist
Ann
creates anxiety.
You also have to have softer foods so that you don't use too much energy chewing. You need you mouth to talk and breathe.
INSIST on new doc. They cut mine and I ended up on respirator. This is not a pretty picture.
If you were on feeding tube...you have speech therapist...right....?
Be well,
When I couldn't swallow much I took things with apple sauce to help get then down ( I picked that up from someone on this site). Then it got worst and I had to make ice cubes with mestinon in so I could open my throat with the cold and get some by letting it trickle down. To do that I was given a mestinon syrup. Have you asked them to let you have the syrup instead of the tablets. It makes things much easier.
Gwyn