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'm really just posting this for fun, but I wonder how you experience MG and how you explain it to others. None of my friends or family really understands how this feels and being new to MG, I have the hardest time explaining it. I just tell my husband that I feel "Myasthenia-y" today. He understands the most because he has to listen to me all the time!
My throat feels like there is a physical lump in it that I swallow around. I also feel a little fluish in my neck and mouth. But not... Can't even come up with the words for that feeling.
When I speak, my vocal chords feel like they are moving up my throat , until I am speaking out of my nose. Then they give up.
My eyebrows, forehead and the corners of my mouth feel like there are little lead weights glued to them.
My neck feels like I have a very, very heavy hat on.
My hands feel like I've been kneading dough all day, but I haven't.
Seldom, but sometimes, my lungs feel like something is sitting on my chest. (like that elephant in the copd commercial).
How do you explain how this feels?
Leslie
My throat feels like there is a physical lump in it that I swallow around. I also feel a little fluish in my neck and mouth. But not... Can't even come up with the words for that feeling.
When I speak, my vocal chords feel like they are moving up my throat , until I am speaking out of my nose. Then they give up.
My eyebrows, forehead and the corners of my mouth feel like there are little lead weights glued to them.
My neck feels like I have a very, very heavy hat on.
My hands feel like I've been kneading dough all day, but I haven't.
Seldom, but sometimes, my lungs feel like something is sitting on my chest. (like that elephant in the copd commercial).
How do you explain how this feels?
Leslie
I go back and read occasionally just to feel better.
Dee
I like this post and would like to hear how others describe stuff as well.
A therapist told me once that steps are 7 times harder on the body than walking. Not sure what that means but giving up steps really helps me.
What you are describing in your chest concerns me. If I felt that way right now...I woud go to ER. Anytime I have any sensation at all in my chest that is danger zone for me.
Connie, I'm glad to hear I'm not the only one that has that taste feeling. These are some of the weirdest symptoms!
I have a new one! (new to me, anyway)
Occasionally I feel like the word turned sideways just for an instant. Just long enough for people around me to wonder if I'm drunk when I stumble to the side.
I worked hard yesterday getting my chickens moved to the winter coop. Today along with the cold weather, my throat feels like you said, Connie, like it is caving in along with my lungs feeling like they are made of clay.
Just going to rest by the fire today.
Leslie