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...
This is my first post. I was diagnosed about six months ago, and as I have read from so many, my nightmare began in my left eye, but a few weeks ago began to take a serious downward turn. By late afternoon on some days I can barely speak or swallow and both eyes are virtually glued shut. I went from being a big invincible dude to a pile of mush, and that has me wondering about my future.
I finally got some attention from the head of neurology at my nearby Kaiser facility, and am beginning five IVIG treatments on Monday. I was hoping to get some feedback on what I could expect.
I'm a 53-year-old male high school science teacher. The more I research, the more concerned I become. I'm wondering how I can convince Kaiser to give me a thymectomy. My first neurologist told me that would be like having my hand removed because of the splinter . That really made me quite angry From everything I've read, there are very positive results from this surgery.
I am very fearful of side effects from the steroids that they say they will begin to give me when my IVIG treatment is completed next week. I'm already on Cellcept. That one scares the crap out of me too.
I was remarkably depressed and found a glimmer of hope in this group. I will continue to read your posts, hoping to learn as I go.
Tomorrow I will have to face calling my parents and my family to tell them of my predicament. I'm sure not looking forward to that
Thanks again for any input you can provide, and I wish everyone in this group the very best.
I finally got some attention from the head of neurology at my nearby Kaiser facility, and am beginning five IVIG treatments on Monday. I was hoping to get some feedback on what I could expect.
I'm a 53-year-old male high school science teacher. The more I research, the more concerned I become. I'm wondering how I can convince Kaiser to give me a thymectomy. My first neurologist told me that would be like having my hand removed because of the splinter . That really made me quite angry From everything I've read, there are very positive results from this surgery.
I am very fearful of side effects from the steroids that they say they will begin to give me when my IVIG treatment is completed next week. I'm already on Cellcept. That one scares the crap out of me too.
I was remarkably depressed and found a glimmer of hope in this group. I will continue to read your posts, hoping to learn as I go.
Tomorrow I will have to face calling my parents and my family to tell them of my predicament. I'm sure not looking forward to that
Thanks again for any input you can provide, and I wish everyone in this group the very best.
I am also overwhelmed... but less so about MG. I am maintaining relative normalcy on mestinon, Cellcept, and IVIG approx every 5-6 weeks. When I first was diagnosed in May I was the picture of health. Now, when my IVIG effects wear off, I have crossed eyes and the associated visual disturbances, slurred speech, and decreased strength in my legs. I also have had some trouble with chewing and swallowing, though only sporadically. I went from working full time to being on short term disability, I hope to go back to work in the next few weeks.
I encourage you to talk to someone about the depression. Your primary care doctor may be a good place to start. I initially spoke with my PCP, as well as a psychiatrist friend, and they set me up with my treatment plan. I have put in some serious time and effort, and it seems to have helped some. Feel free to message me if you would like some more specific info. It is normal to feel sadness and hopelessness when first going through the initial stages of the diagnosis, but only you can tell if your despair feels deeper or is persisting.
I hope you are considering getting a second neurology opinion. Many people here on this site have done so for various reasons. I did, as well. I actually have a 3rd opinion scheduled in a couple weeks. Before your appointments, it helps to jot down some questions or issues you wish to discuss, and to try to rank them in order of importance. You could even make two copies, one for the doc and one for you to reference. If you hand it to him or her at the beginning of the visit, it may help direct discussion in ways that are most helpful to you.
Good luck and I hope things improve for you! We are here when you need us.