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...
(apologies to those in the southern hemisphere)
Because of its unpredictability and usual sudden and unexpected onset, MG is a particularly difficult disease to handle emotionally at any time. But those who are in the throes of diagnosis or trying to find the treatment that works at this time may be having a particularly difficult time.
It is a major loss at the time when most people are beginning to get out and take advantage of the longer days and better weather, it is the usual time when children's activities outside the home are increasing and we are struggling. It is how people feel who have been hit with a major loss around holidays, when your spirit is out of sync with those around you and there is no way to participate in the life you know. In addition to MG, it is a Problem (with a capital P) and a Pill is not the answer, but may be part of the answer.
We all have to find our own way through the dark times and what works for one may not for another, although here we can let people know what our experiences are. But the recognition of the problem and aggravating factors is a beginning and the question of depression and sadness and drugs can be addressed. I have a lot of clinical (serious) depression in my family, but some of what I attributed in myself to depression was MG. But that doesn't mean that treating the MG will make the depression go away.
It has been recognized that giving psychoactive drugs to people who are mourning (and losing your health and usual activities requires that) is not helpful. You have big problems to solve and it may get in the way of clear thinking and solving problems in the manner that is "most you." However there may come a time when the sadness becomes depression and medication is indicated.
Signs of clinical depression include: "stinking thinking," feelings of worthlessness, despair, intrusive thoughts of how bad you are and past misdeeds (no matter how unimportant), suicidal thoughts (get to the doctor quick), inability to get beyond the sadness to problem solving or to enjoy activities in which you can participate, eating and sleeping difficulties (not related to MG), loss of interest in relationships. Taking medication in those circumstances will be helpful, not harmful, and allow you to direct your energy into more positive thinking and enjoyment.
In general if you take medication and feel "flat," it is not indicated or at least the wrong medication for you. If you take medication and feel more like yourself and able to participate more fully in the life around you, then at least for now that is what you need to function fully. MG stinks and we need all the help we can get and if that's another pill, OK.
Regarding spring fever, medication will not make the snow melt or dry up the muddy roads! or get rid of the heebie jeebies for that matter.
hugs to all, b.
Because of its unpredictability and usual sudden and unexpected onset, MG is a particularly difficult disease to handle emotionally at any time. But those who are in the throes of diagnosis or trying to find the treatment that works at this time may be having a particularly difficult time.
It is a major loss at the time when most people are beginning to get out and take advantage of the longer days and better weather, it is the usual time when children's activities outside the home are increasing and we are struggling. It is how people feel who have been hit with a major loss around holidays, when your spirit is out of sync with those around you and there is no way to participate in the life you know. In addition to MG, it is a Problem (with a capital P) and a Pill is not the answer, but may be part of the answer.
We all have to find our own way through the dark times and what works for one may not for another, although here we can let people know what our experiences are. But the recognition of the problem and aggravating factors is a beginning and the question of depression and sadness and drugs can be addressed. I have a lot of clinical (serious) depression in my family, but some of what I attributed in myself to depression was MG. But that doesn't mean that treating the MG will make the depression go away.
It has been recognized that giving psychoactive drugs to people who are mourning (and losing your health and usual activities requires that) is not helpful. You have big problems to solve and it may get in the way of clear thinking and solving problems in the manner that is "most you." However there may come a time when the sadness becomes depression and medication is indicated.
Signs of clinical depression include: "stinking thinking," feelings of worthlessness, despair, intrusive thoughts of how bad you are and past misdeeds (no matter how unimportant), suicidal thoughts (get to the doctor quick), inability to get beyond the sadness to problem solving or to enjoy activities in which you can participate, eating and sleeping difficulties (not related to MG), loss of interest in relationships. Taking medication in those circumstances will be helpful, not harmful, and allow you to direct your energy into more positive thinking and enjoyment.
In general if you take medication and feel "flat," it is not indicated or at least the wrong medication for you. If you take medication and feel more like yourself and able to participate more fully in the life around you, then at least for now that is what you need to function fully. MG stinks and we need all the help we can get and if that's another pill, OK.
Regarding spring fever, medication will not make the snow melt or dry up the muddy roads! or get rid of the heebie jeebies for that matter.
hugs to all, b.
I came down with my first symptoms in the spring and can remember the progression of the disease in the first year. During my second spring, I was in much worse shape. I can remember standing at my kitchen sink, looking out at the birds at my feeder, as I choked on my Mestinon and CellCept. The world was coming alive and I felt as though I was dying.
Curt
Kimber
Many, many others too.
I identify with everything - everyone - said.
- Ross
For me this spring, I am not depressed but frustrated (and mad!). I had my plasmapheresis on Friday and felt great until Saturday afternoon. I couldn't figure out why I was "really needing" my mestinon for symptoms and why I was so tired. Then it dawned on me that the temp had risen to the high 80's and I was outside for the whole day for the first time this spring. Hopefully my body will adjust with the rise in temperature. If not, on to plan B.
Constant frustration can lead to depressive feelings.
I think one of the hard parts of having this disease is the seemingly constant changes or adaptations we must make to stay well.
Keeping a positive attitude about how we make these changes and adaptations helps.
For those who are truly depressed, medications help tremendously
~sherry.
Thanks for this post!
Love, Becca
I have always been a :busy person" and since being diagnosed one year ago my life has so changed. As a whole I am a very positive thinker but must admit this MG stuff is scary to me!
~Live,Laugh,Love~
Marvin