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
On a good note, at my 1 hr naturopath visit earlier, the first in a year, she was amazed that I could talk and not get out of breath. She usually has to carry my bag of reports and results out to the car for me and saw that I was doing well on the Mestinon. We still have to discover the cause of the leg cramps and recurring kidney stones but I've made such progress already.
Flutebell
I too have wondered lately how to describe stuff. I feel sorry for my family because 1 minuet I can do something and the next I am asking them to do it.
One minute I say I cant carry my 25 lb grand kids and the next I bend over and pick them up.
I was trying to think in my head how it feels to carry my grandkids. It feels like an electrical shock from the top of my head to the bottom of my toes.
It is much more than weakness. I have trouble understanding so I can only imagine how they must be confused. It is so inconsistent.
One minute I will use steps and the next day I would even go near a step.
I sometimes feel bad for the confusion they must see.
Oh, today I am MG ing.
Your term is a bit more graceful.
Really prettier.
Maybe I will try your term next time haha
Some of us have been on our death bed. My friends and family watched me on a ventilator.
They are very supportive and I think that is why.
My life was at 0 once too.
Sort of like a storm and tornado.
Takes a while to rebuild new.
Anyone else have this feeling on your breath almost like a taste in your mouth that signals the mg acting up? I just can't explain it! Almost like that feeling /taste you get in your throat when you know your getting sick? But not... Lol argh. Anyone?
Jacki, I'm really sorry about your friends. It's times like this that reveal who is worth being friends with. I try really hard not to complain of it to most people because I'm afraid of turning people off. It's hard not to when you constantly feel bad. This thing is kind of "in your face". But it is really important to have people to lean on. Do you have a support group near you or a church to join?
Leslie
Writing on here gave me emtional support I needed to not need to talk to anyone else. Except my husband....he is a good listener.
Especially in the beginning when every day for 2 years I had a different ache or symptom. Now it has stabled out but every day is pretty unpredictable.
Reality.
I figure if I don't get it....expecting them to would be unrealistic.
I think what I hate the most is the unreliability.
I can babysit one day for one child then the next day I tell the next child no.
That is the worse part for me.
But once again I say
Thank God for my problems.
Acute paralysis can prevent me from being able to lift things at times etc. In other words, my brain cannot get the signal through to my muscles to tell them what to do because it is being blocked and the receptor of the signal may be damaged to some degree. In addition, When I am feeling stronger, I have to believe that it is happening as the signal makes it through or it makes it even more difficult. You have to believe you will improve and exercise taking baby steps of progress in strength. Exercise when you are strongest and do it as often as you can.
Cold damp weather makes it worse.