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. :)
It seems to be part of it,, but I also was told a couple of years ago that I had vertigo. hmmm
good luck to you,
Annette
Sometimes I shuffle if my legs are too heavy and loose my baance oftenthen. I belive it is all due to fluctuating muscle strength.
If I know I am needing to be up walking a whle like at a mall or store, I use a rollator walker. My new sprots one just came and it is amazing how much faster I cn walk with it without fear of falling.
I have a boat...one day I found myself thinking ...foot onto boat and had to lift it a bit. It is wild. Somedays worse than others. I had therapy for a while. I learned some good things but remember ...tooo many repetitive exercises make us worse. The therapist don't always understand that. I had one therapist having me do breathing exercises and by the end of the week I was really having trouble breathing. They could never really understand how too much exercise can hurt us.Take care
Ann
I just posted something about my experience and now I see this...
I have disequilibrioception. Balance is affected.
Got a month or so to go to my new Neuro appointment, so lucky me on that one. So then I have to wonder what the goal is for my doctor and PT folks. It seems we all have these issues to some degree or another, pending on energy and muscle levels, so I have to wonder what my doctor was thinking.
I'm going to go tomorrow to see what he wants me to do, or how he plans to treat it, but I think I'm going to have to explain to him in more detail that what I deal with is what is considered normal, and actually stand up for myself. I already planned on bringing my rolling walker as it is, because he mentioned light exercise. I get the feeling it will definitely be interesting. I just pray I don't hurt myself, or go into crisis.
I went to a PT for the first time today and I get to go back again on Friday... lots of things are out of whack and the idea right now is that they are due to the way I am over/under compensating for weakness in certain muscle groups. I have been dizzy before, I have bumped into walls before. These could also be eye issues. I hold on to things often.
The "walking funny" thing can even lead to some other problems... like SIJD.... and that is A PAIN IN THE BUTT ;)
I am wondering how long others have had this issue and if things have improved with PT over time?