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...
Hiya everyone. Got a few questions and an update.
So I went to PT today, and to my surprise it wasn't for my lungs, but for the way I walk, among other things. I must of misunderstood my Dr. when we were talking on Thursday. Typical me. Anyway, I was being evaluated today, and I personally feel I failed miserably. According to the therapist, I walk funny. I switch the weight on my legs, to help prevent me falling. I favor one side for awhile, until it gets a bit tired, and then switch. I have found doing this helps some, but apparently it is funny to do that.
I also have a lot of balance issues. I almost fell 6-7 times today, and thankfully I was in a room of people who could of helped me if I really did fall over. I was told that I rely on my eyes for my balance far too much. I was also told that my motor skills are quite dampened, as I have to focus on a task rather then instinctively doing it.
So, while this is all very new and scary for me, I was curious if this is related to the MG, and can any of this be improved any? The therapist seems to think that he can improve all this, and I'm all for it if it can be done. I hate nothing more then falling all the time, or getting disoriented with quick motion due to dizziness. Is what I'm experiencing caused by the MG? Or do I have another problem I need to be concerned about on top of all the other issues I got?
Thanks for your input, as always, and thanks so much for making me feel so comfortable asking these questions. You guys really do make me feel like I'm apart of a family here. :)
So I went to PT today, and to my surprise it wasn't for my lungs, but for the way I walk, among other things. I must of misunderstood my Dr. when we were talking on Thursday. Typical me. Anyway, I was being evaluated today, and I personally feel I failed miserably. According to the therapist, I walk funny. I switch the weight on my legs, to help prevent me falling. I favor one side for awhile, until it gets a bit tired, and then switch. I have found doing this helps some, but apparently it is funny to do that.
I also have a lot of balance issues. I almost fell 6-7 times today, and thankfully I was in a room of people who could of helped me if I really did fall over. I was told that I rely on my eyes for my balance far too much. I was also told that my motor skills are quite dampened, as I have to focus on a task rather then instinctively doing it.
So, while this is all very new and scary for me, I was curious if this is related to the MG, and can any of this be improved any? The therapist seems to think that he can improve all this, and I'm all for it if it can be done. I hate nothing more then falling all the time, or getting disoriented with quick motion due to dizziness. Is what I'm experiencing caused by the MG? Or do I have another problem I need to be concerned about on top of all the other issues I got?
Thanks for your input, as always, and thanks so much for making me feel so comfortable asking these questions. You guys really do make me feel like I'm apart of a family here. :)
Just wanted to put in my balance "adventures" with MG. Sometimes the weakness in my legs comes on so quickly that I do fall,and I have to say,my body can't take much more of that. Also sometimes it is just my side and back muscles that quit working. That causes me to look like the upper part of my body is just going to fall off. I will fall soon if I don't get to a place to sit. My leg muscles only hold up my upper body dead weight for a few seconds. I get embarrassed when I am out in public. I was at Big Lots the other day and an episode came on, and even though I had a buggy I was holding onto, I still fell and took a whole row of toys down with me. I was slurring so bad, that I know the employees thought I was drunk. They helped me to a chair, and I sat for a few minutes. Thought I could make it out the store. Not to be...This time I fell and took my buggy down with me. I had no control over any of my muscles. I felt like a fish flopping out of water. Needless to say, I haven't been back to that store. MG really sucks...I hope you all have the best day for each of you that you can...... :)
I bought my first cane today. Yay me!
Best of luck with the PT Tesinato. Be cautious though not to over due.
Larissa
Several times at work this year I feel my legs going weak and think legs don;t fail me now.
Annette
We are on the same page here right now!
The current theory is: I am completely throwing my pelvis outta whack with the way I am compensating for weakness when I move, stand and sit. The lack of strength in my muscles has caused some problems with my joints and has been giving me some SI joint dysfunction issues (this is how tough chicks say "pain"). The goal is to stabilize and strengthen my BALANCE.
One awesome thing is that I get to go buy a wii fit game to do my exercises... my kids will be so jealous, it's not even my Birthday ;P
Thank you for posting about this!
Love, Becca
But I have been doing Tai Chi for years and my balance is good. I think it trains the muscles to know what other muscles are doing, so when something starts to fail, others kick in and although I may have to sit down, on the ground sometime, but I am often working that way any way, I don't lose control. My father used to fall every day. b.