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 quickly learning that nothing seems typical about this disease and it affects everyone differently but does the problem area also change?
Besides my drooping eye, I seem to consistently have trouble with my jaw and my hands. Although there are other areas from time to time, my jaw and hands are a reoccurring issue. Wondering if that is always going to the case or could that change too?
Also, has anyone had their eyelashes fall out? On my non-drooping eye almost all of my eyelashes have fallen out. I don't mean a few here and there, I mean all of them...gone. I have a few in each corner but in between through the middle there isn't even one lash. What's that all about!!
Besides my drooping eye, I seem to consistently have trouble with my jaw and my hands. Although there are other areas from time to time, my jaw and hands are a reoccurring issue. Wondering if that is always going to the case or could that change too?
Also, has anyone had their eyelashes fall out? On my non-drooping eye almost all of my eyelashes have fallen out. I don't mean a few here and there, I mean all of them...gone. I have a few in each corner but in between through the middle there isn't even one lash. What's that all about!!
If you use your hand a lot that could explain hand issue and jaw issue....eating or talking.
Just a thought
My neuro recommended low dose of prednisone in the beginning .
My husband and I descided to be hopeful and not do prednisone because of its side effects thinking I wouldn't get worse.
Well I got worse.
Hospitalized for over a month and on respirator and unable to move.
Ended up on seriously high dose of prednisone and cellcept.
If I had to do it all over I would go on low dose of prednisone to prevent crisis, mestinon, and cellcept. After being on cellcept for a year I would cut down the prednisone.
We have to hope for best and plan for worse.
It is really hard to figure MG out. You will get to know your body mostly and how you feel, what makes you symptomatic and when you need to rest. Why we get certain symptoms, I just don't know sometimes. The weather effects me, stress, food (high protein, veggies, low sugar, gluten free) Also, if your body is fighting an infection, you will feel symptomatic.
A while back it was my eyes looking at hundreds of wires , different colors , sizes etc and thank goodness I didn't have all symptoms at once as if I did I'd probably wouldn't be employed now lol.
As time goes on you will like a lot of us start to get early indications of soon to come mg fatigue. It's than where we usually get very creative to try and complete our different tasks whatever they maybe. Often it's rest or a break that does it , sometimes not hence the frustration.
Cj