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 all. This is my first post. I'm glad to have found this site as many people have shared their personal experience with MG.
I am 65 and I was just diagnosed 3 months ago. I still work in a management position from my home. ( when not traveling ) I hope to retire in around 2 years.
I really did not realize what was going on but the symptoms have been there for awhile. I have played pedal steel guitar for 35 + year in weekend bands and I noticed that the equipment all of a sudden seemed extremely heavy at the end of the night. I was attributing this to approaching the golden senior years but that was not the case. I had also noticed some changes in my playing ability after a couple of hours of being on a band gig. My arms were just "tired". Then what is normally reported as the first symptom made itself known. We were out on a short vacation trip and I was driving a newly acquired 2006 class A motor home and my right eye lid pretty much closed on its own. I had to pull over as my vision was blurry. I went in for testing when we got back and found out that I was blessed with MG. I have now advanced to having throat issues including swallowing and talking, along with my other reported weakness.
I should have not been surprised. My father had MG. He was diagnosed in his early 80's and suffered with it until he passed away at 86. They say that MG is not passed on to the next generation but I guess that I'm proof that this is not always the case.
The bottom line is that I am now on Mestinon like so many on here. It comes with all of the cramps and stomach discomforts as described by many who post on here. Hopefully, some of this research will pan out and we can get back to a more normal life someday. meanwhile, we are all in this together.
steelplayer
I am 65 and I was just diagnosed 3 months ago. I still work in a management position from my home. ( when not traveling ) I hope to retire in around 2 years.
I really did not realize what was going on but the symptoms have been there for awhile. I have played pedal steel guitar for 35 + year in weekend bands and I noticed that the equipment all of a sudden seemed extremely heavy at the end of the night. I was attributing this to approaching the golden senior years but that was not the case. I had also noticed some changes in my playing ability after a couple of hours of being on a band gig. My arms were just "tired". Then what is normally reported as the first symptom made itself known. We were out on a short vacation trip and I was driving a newly acquired 2006 class A motor home and my right eye lid pretty much closed on its own. I had to pull over as my vision was blurry. I went in for testing when we got back and found out that I was blessed with MG. I have now advanced to having throat issues including swallowing and talking, along with my other reported weakness.
I should have not been surprised. My father had MG. He was diagnosed in his early 80's and suffered with it until he passed away at 86. They say that MG is not passed on to the next generation but I guess that I'm proof that this is not always the case.
The bottom line is that I am now on Mestinon like so many on here. It comes with all of the cramps and stomach discomforts as described by many who post on here. Hopefully, some of this research will pan out and we can get back to a more normal life someday. meanwhile, we are all in this together.
steelplayer
I take it that many on here have gone the full route including steroids and blood therapy. It's one day at a time at the moment. The doctor has me taking 60 mg three times a day as a starting point. He wants to increase the number of pills taken a day if needed.
That's where things are at the time
Thanks for writing.
I too got it at age 65, took mestinon and prednisone for about 6 months to get the MG symptoms to go away and then gradually tapered down on prednisone and found that I was in full remission. I had MG for a year and now have been 2.5 years med free and symptom free. Something like 15% of us go into remission.
I took Imodium with my mestinon and ate part of a granola bar with each dose to help with the stomach problems.
The most important part of treatment is to have a neurologist experienced in MG. I also read as much as I could about MG and asked a lot of questions here and to my MD to understand what was happening and the treatment.
Good Luck
Russ