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 with ACHR positive MG in May of 2012. It went from mild to crisis in a few weeks and then over a year I got it under control and was one of the 15% who go into remission. 25 months later, I am still MGless due to luck rather than anything I did.
Yesterday, I got an email from an acquaintance and shirttail relative (uncle's brother-in-law) who has had MG for 14 months and is trying for control. He had just heard I too had suffered from this very rare disease and sent me his log of treatments, battles with mestinon, failure of IVIG and all of the usual things we go through. He hasn't joined an online group, at least not that I know of and has struggled through this on his own.
It makes me think how difficult to do this on your own --having MG in isolation with just your doctor to talk to. Makes one appreciate the group here!
I let him see my own log of MG as I went through much the same problems he has encountered. Although I don't know if it is any value, you can read it too, I shared it on my cloud drive. The link below should get you there. Mine was accompanied by my spouse's battle with cancer so there is overlap of the two. (a warning, I am verbose and the order of the pieces are scrambled--so check the dates if you want to know the order -- May 2012 diagnosis May 2013 remission
In the middle of MG things get intense, life is altered and the future is uncertain. My luck was good and I can look back to it as a bad memory, but never out of mind is remissions are just that -- time off periods that have no surety of continuance.
https://drive.google.com/file/d/0B8SQWdFJt54LYUJQbjJ4SGNyWkk/view?usp=sharing
May you all have as good of luck as I have had.
Russ
Yesterday, I got an email from an acquaintance and shirttail relative (uncle's brother-in-law) who has had MG for 14 months and is trying for control. He had just heard I too had suffered from this very rare disease and sent me his log of treatments, battles with mestinon, failure of IVIG and all of the usual things we go through. He hasn't joined an online group, at least not that I know of and has struggled through this on his own.
It makes me think how difficult to do this on your own --having MG in isolation with just your doctor to talk to. Makes one appreciate the group here!
I let him see my own log of MG as I went through much the same problems he has encountered. Although I don't know if it is any value, you can read it too, I shared it on my cloud drive. The link below should get you there. Mine was accompanied by my spouse's battle with cancer so there is overlap of the two. (a warning, I am verbose and the order of the pieces are scrambled--so check the dates if you want to know the order -- May 2012 diagnosis May 2013 remission
In the middle of MG things get intense, life is altered and the future is uncertain. My luck was good and I can look back to it as a bad memory, but never out of mind is remissions are just that -- time off periods that have no surety of continuance.
https://drive.google.com/file/d/0B8SQWdFJt54LYUJQbjJ4SGNyWkk/view?usp=sharing
May you all have as good of luck as I have had.
Russ
Now that I am all about gut biota, I wonder if we messed around with our gut biota somehow. From what the research shows, there are certain bacteria that disappear when we lose weight. Also the stress from your wife's breast cancer (mine also faced this the year before I got hit by the MG truck).
Since you deliberately changed your diet to low sugar/low starch, could this have been a contributing factor to your remission?
Anyway, thanks for posting this -- I haven't read it all, but I intend to! ~Joe