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 everyone I wanted to introduce myself to the group. I was recently dx with MG I have double vision, drag my right leg, severe muscle weakness in my right hand, both shoulders and digestive problems. After a year of test I was finally dx. with MG. I was trying to work and was at the end of my rope, when I collasped at work. My job is really stressful so I'm not sure if I'll have a future in child welfare anymore. I was started on Mestinon 60 mg 4x's a day. My physician has not started me on steroids, she wanted to see how I responded to the Mestinon. I have been taken off work for over 90 days due to severe weakness, problems with my gait and double vision. This is all new for me and has led me to really think about my life goals as I am a person who was always on the go. I now have to ask for help and take each day one at a time. I am looking for words of encouragment and success stories from fellow group members as MG is new chapter in my life.
Generally the first year of MG is the toughest as we figure out what treatment works. Mestinon usually helps with the day to day problems, but we also need something to stop our immune system from making the bad antibodies.
I used Mestinon and Prednisone and after about 5 months (prednisone gradually increased from 10 mg/day to 60 mg/day) my double vision and other MG symptoms went away. Then I tapered the prednisone and had planned on switching gradually to Imuran, but as I tapered down, and finally quit, it turned out I was one of 15% who go into remission. 1 years of MG and now 3 years of remission.
The most important part of having MG is a decent neurologist who works with MG patients and is available (or their staff is) to talk to when needed. That usually means the biggest medical institution you can find near you. I was lucky in that I lived near Mayo Clinic Rochester, MN. Mayo claims to have 700 different folks with MG under treatment, so my neuro was very experienced!
good luck
Russ
Good luck
However, remember, that it is treatable, most folks get it under control within the first year, and figure out how to get on with their lives. My first 6 months were quite bad, but by that time high doses of prednisone had stopped my immune system from making the bad antibodies, my neuro-muscular connection had regenerated, and I was normal from the physical standpoint. Prednisone did a great job of getting mg under control, but it was not a good long term drug, so with MG symptoms gone, I planned to switch to Imuran. During the taper of prednisone, I found I had gone into remission which has lasted for 3 years now -- medication free. (15-20% of us do have remissions of varying length).
Anyway, take the treatments, keep pushing your neuro and follow the advice,, and you will most likely find that next year you will be functioning decently and getting on with things.
There are some folks who don't get it under control, but often they have many other co-existing conditions that make treatment difficult, and occasionally there are folks who don't respond to the normal treatments. However most do well. Personally, I chose prednisone as I wanted to get MG under control quickly and then start considering the longer term treatment options. Prednisone has side effects, but for me they were very much less bothersome than full blown MG problems.
Good Luck Russ