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...
Hi all,
I am a 67 year old woman who had a pretty sudden onset of ocular symptoms beginning 5 weeks ago. They first thought it was Bell's Palsy, but my labwork overwhelmingly confirmed it was MG. My symptoms have gotten progressively more severe, moving to my speech and breathing issues. I live in Montana, where there is limited medical care. I was fortunate to get into an MG specialist at Duke (my daughter and son-in-law live in that area) relatively quickly-I empathize greatly with the stories I've seen on here of those of you who have been waiting a long time for a diagnosis or appt.
I first saw a neuro-opthalmologist who put me on mestonin. I tolerate it fairly well, and it has made a difference in my speech and breathing. When I finally saw the neurologist, he decided to start me with five outpatient plasmapharesis sessions. I have done three sessions so far, with minimal results. It is very disheartening. He hoped the plasmapharesis would give me short-term relief, and we could start an immunosuppressant as well. I really do not want to be on steroids-I have had bad experiences in the past and during my first week of symptoms, they put me on prednisone and my blood pressure spiked so high that I was told to discontinue.
By far the worst part for me is the ptosis. My eyes can't open on their own at all, I have to raise my eyelids with my fingers to see anything for most of the day (some days I will have an hour or so where one is open enough to read a little. Does anyone have experience with this? Any great gadgets or tips that have helped?
I also feel very scared and lonely, even with my family around me. I think it is hard for others to really understand what it is like to experience this disease. My daughter found me this site-I have never participated in something like this, so please be patient with me as I learn how it works. I am hoping I may connect with others who understand this disease.
I’m sorry you are not feeling well, I also have MG which started a year ago,with double vision, slurred speech and weakness all over.
I did end up having a thymoma and had a thymectomy . Have you had a scan of your chest yet?
I didn’t have too much ptosis but I heard that ice might help a little. I know it is so terrifying . There is hope that you will get the symptoms under control , I am feeling so much better (almost normal) now and only on imuran.
I never had plasmapharisis but I had IVIG a few times and it didn’t work that well for me.
Please post any questions .
We are all here to help.
I did have a chest CT and had no evidence of thymoma or even a residual thymus. But, I appreciate you asking about that.
Thanks again for writing.
Everybody is different with MG and we all have friends and relatives who don't get it. But, most of the people who read this site understand how you feel.
Keep up the treatment.
Sorry to hear you have MG and are having problems. I got it at age 65, and it was very bad at first. I was able to take prednisone and it took about 4 months to get rid of just about all of my MG symptoms. It messed with my bp, blood sugar, and had other problems, but it was like a miracle drug that took me from in the hospital with breathing problems to back to functional. I think most doctors start us on prednisone because it is the fasted of the drugs to work and then usually we switch to something else gradually for the long term.
I think that the blood pressure can be treated during the time it takes to get MG under control and you can switch to something else. I wanted to get rid of the MG problems and so put up with the problems and extra meds to make that happen.
Good Luck Russ