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...
Hello, I was diagnosed with mg about three years ago and recently suffered my worst exacerbation yet. It began about a month ago with increasing difficulty walking. About a week ago I was unable to climb stairs and was admitted into the hospital for 5 days of ivig and an increase in my Prednisone. Luckily my breathing was unaffected, the problem area is my legs and arms.
I was discharged yesterday and while I am glad to be back home I am still experiencing weakness. Has anyone had an exacerbation this bad before and can share their stories?
Does anyone else have/have past experience with trouble walking and getting up stairs? Is there any advice you can offer?
I am just so frustrated with this whole thing and would love more than anything to get back to my "normal" any encouraging stories are appreciated
When I had problems, i.e. with stair climbing and walking, I just assumed I was being under-treated -- that the MG was not sufficiently under control, and I needed to up my prednisone.
For most folks with MG, we do have the ups and downs. Our goal is to take the lowest dose of medicine that keeps MG under control because of the side effects of the medications and so we are always adjusting to try to find that minimum dose. And because of that, we are on the edge of having mg controlled.
Living on that edge means slight changes in our health otherwise can tip us into worse symptoms. Minor things like temperature and even a cold can push us there. Stress can do it.
And of course, since our treatment and the response to it are delayed, what we change this week in our medications may not show up until many weeks later.
This balancing act is ongoing for all of our life unless we are lucky and go into a remission (15% or so have these of varying lengths).
My own choice was to slightly over-medicate with prednisone, trying to avoid the exacerbations in favor of better control. In the balance of prednisone side effects vs living without MG symptoms, I wanted to be rid of the MG symptoms.
Each of us has to think about those kind of choices based on our own situation. Mine, being old (65) and having a wife starting cancer treatment when I was diagnosed made it easy to go for best functionality and dealing with the side effects as they arose. The difference can be taking an additional 5mg prednisone (i.e. 15 vs 10 when 10 seems to be just enough). I looked to my mother who took prednisone from age 65-91 for a different autoimmune disease. Had she not taken it her polymyalgia rheumatica would have made life intolerable. The side effects were worth being able to function for her.
We have an immune system that is misbehaving. We want to have a good life and that means suppressing our immune system. Before prednisone and the other immune system treatments, about 40% of those diagnosed with MG died within 3 years and most of the rest sometime later. MG was a life destroying disease. Now it is not, and for most folks, we figure out how to cope, and although life is not normal, it can be very good.
Someday there will be a better treatment, but for now, we have to balance the treatment side effects with having a decent life.
It is hard. Life is not fair. We don't deserve MG. We didn't do anything wrong to get it.
When I complained to my neuro, she reminded me that MG is treatable and not progressive if treated and a large majority of her patients did quite well with treatment. She contrasted that to her patients with Parkinsons and MS and the dementia diseases where treatment improves symptoms but does not stop the inexorable progression to death.
Good luck
Russ