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 was diagnosed about 2 months ago with MG. I was 51 at the time and being a female it wasn't as common, or so I was told. At the time I thought I had a stroke because my right eyelid drooped to almost closing. My question is about muscle weakness. Does it come on gradually or all of a sudden? Will I just be walking and perhaps fall down?? I am a middle school teacher and am 1 1/2 years away from retirement. Today I was talking with a friend and felt like my facial muscles weren't working correctly and my tongue felt thick and I had a slight slurred speech. Is this related to MG?? I also had a little bit of difficulty swallowing my iced coffee. It felt like I had something blocking it from going down. I had gastric sleeve surgery a year ago and lost 85 lbs and in May started working out at the gym. The doctor feels that this may have triggered the stress that brought on the MG since I have not exercised in MANY years. I walk about 3 miles a day and have for over a year now. When I started the gym I dove in head first, working out hard 3 times a week. For the past few weeks, I have slacked off from the gym and walking and for some reason the symptoms are WORSE! My eye is droopy more often now then when I was exercising. Tomorrow I will be back walking and going to the gym. Any comments welcome. I just would like to know what to expect. I certainly don't want to collapse while walking in the neighborhood and have to call my husband to say "I've fallen and I can't get up!"
Each of us has different problems with MG. At first I took lots of mestinon -- maybe 60mg every 2 hours when I wanted to do things and less when I was taking it easy. So if I wanted to walk, I took a pill about 30 minutes before doing it, and that helped me.
I never got so weak I fell or passed out or anything dramatic, but instead just got tired fast and had to stop often for my muscles to recover and catch my breath. When prednisone kicked in after about 4-5 months I no longer had these problems and could do what I wanted to almost normally.
Good Luck
Russ
Good Luck
I have randomly fallen several times. I always fall when I'm crouching down to look at something (usually in a store with a million people watching). It has affected my arms and hands. My handwriting is scary! My speech gets slurred or voice gets weak and I sound like I'm about to cry. I hate that the most probably because it never fails, when I need to sound the strongest is when my voice quivers. Sending prayers your way! As you can see, it affects all of us differently.
I had begin to use a walking cane by then as I was being misdiagnosed. By July 6 I thought I was going to die as my symptoms were as follows , droopy eye lids, double vision, what I call crazy eyes ( where things look like it's jumping), arms, chest,hands, legs, speech all had lost it strength. When we went into see a doctor in the next day for a referral to the university hospital she told us to go immediately to their emergency room as my condition could not stand to wait. Needless to say when we got to be emergency room my legs collapsed from under me and I became total deadweight. She had given me all the records to take with us and within an hour and a half I was diagnosed with MG. I had started choking on my on salvia. Breathing was very shallow and I refused being Intubated. I was in ICU for a week and from that point have been in ICU four more times. My meds are mestion 90mg every 3 hours and 180 mg at night, 150 mg imuran and ivig gammagarrd infusion every 3 weeks( which is a 2 day treatment).
I have taken aqua threapy due to going into exacerbation with the regular exercise. My improvement overall is a 100% from where I was ( a vegetable). But I can't walk yet or comb my hair but I am learning to bath my self in the shower( use shower chair). My muscles are getting much stronger but my MG Nuero decided I'm not responding quick enough and has referred me to a surgeon to have my thymus scrapped
If you are thinking about that, you not only need to talk to your neuro about getting the treatment improved/changed, but should talk to someone about depression. MG is treatable and most of us do well when we get the treatment figured out -- hang in there!