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...
Back in 2012 when I was early into diagnosis and treatment of MG and wondering if I would ever get a reasonable level of functionality back, I was told that one should treat a chronic disease like MG the same way one treats a loss or death. One view of this process is the 5 stages of grief steps. MG chronically changes most of our lives for the worst and the steps we go through include:
From Wikipedia
Denial As the reality of loss is hard to face, one of the first reactions to follow the loss is Denial. What this means is that the person is trying to shut out the reality or magnitude of his/her situation, and begins to develop a false, preferable reality.
Anger "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?"; "Why would God let this happen?"
Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Anger can manifest itself in different ways. People can be angry with themselves, or with others, or at a higher power, and especially those who are close to them. It is important to remain detached and nonjudgmental when dealing with a person experiencing anger from grief.
Bargaining "I'll do anything for a few more years."; "I will give my life savings if"
The third stage involves the hope that the individual can somehow undo or avoid a cause of grief. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Other times, they will use anything valuable as a bargaining chip against another human agency to extend or prolong the life they live.
Psychologically, the individual is saying, "I understand I will die, but if I could just do something to buy more time" People facing less serious trauma can bargain or seek to negotiate a compromise. For example "Can we still be friends?" when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it is a matter of life or death.
Depression "I'm so sad, why bother with anything?"; "I'm going to die soon so what's the point?"; "I miss my loved one, why go on?"
During the fourth stage, the grieving person begins to understand the certainty of death. Much like the existential concept of The Void, the idea of living becomes pointless. Things begin to lose meaning to the griever. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and sullen. This process allows the grieving person to disconnect from things of love and affection, possibly in an attempt to avoid further trauma. Depression could be referred to as the dress rehearsal for the 'aftermath'. It is a kind of acceptance with emotional attachment. It is natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation. Oftentimes, this is the ideal path to take, to find closure and make their ways to the fifth step,
Acceptance.
Acceptance "It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, individuals begin to come to terms with their mortality or inevitable future, or that of a loved one, or other tragic event. This stage varies according to the person's situation. People dying can enter this stage a long time before the people they leave behind, who must pass through their own individual stages of dealing with the grief. This typically comes with a calm, retrospective view for the individual, and a stable mindset.
****
When those of us who have haunted this discussion group for a few years see newly diagnosed folks come here, scared, shocked, and trying to figure out what their future will be, we do see evolution in many that does seem to follow the 5 steps listed above.
I wrote often about this at my blog including my attempts to work through it at 6 months when the future seemed tenable but not desirable and I was contemplating suicide. I didn't really seriously consider it as it would have been selfish when my wife was simultaneously in a fight for her life with stage 4 cancer (she got through it too).
My own view of the 5 stages and my decision to persist with an MG altered life:
http://riverroadrambler.blogspot.com/2012/11/skipping-through-stages-of-grief.html
My many comments and progress reports in 2012,2013 leading to full remission from MG a 15 months ago that is still holding. If there is any value in these, it is that, for whatever reason, the path I took through MG treatment has put me in full remission and was guided by the World's Number 1 hospital system -- The Mayo Clinic (I spent most of my life working there in medical research and medical systems so am rather pleased with US News and World Reports 2014 #1 ranking!)
https://www.google.com/search?q=myasthenia+gravis+site%3Ariiverroadrambler.blogspot.com&oq=myasthenia+gravis+site%3Ariiverroadrambler.blogspot.com&aqs=chrome..69i57.32055j0j4&sourceid=chrome&es_sm=122&ie=UTF-8#q=myasthenia+gravis+site:riverroadrambler.blogspot.com
Good Luck
From Wikipedia
Denial As the reality of loss is hard to face, one of the first reactions to follow the loss is Denial. What this means is that the person is trying to shut out the reality or magnitude of his/her situation, and begins to develop a false, preferable reality.
Anger "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?"; "Why would God let this happen?"
Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Anger can manifest itself in different ways. People can be angry with themselves, or with others, or at a higher power, and especially those who are close to them. It is important to remain detached and nonjudgmental when dealing with a person experiencing anger from grief.
Bargaining "I'll do anything for a few more years."; "I will give my life savings if"
The third stage involves the hope that the individual can somehow undo or avoid a cause of grief. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Other times, they will use anything valuable as a bargaining chip against another human agency to extend or prolong the life they live.
Psychologically, the individual is saying, "I understand I will die, but if I could just do something to buy more time" People facing less serious trauma can bargain or seek to negotiate a compromise. For example "Can we still be friends?" when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it is a matter of life or death.
Depression "I'm so sad, why bother with anything?"; "I'm going to die soon so what's the point?"; "I miss my loved one, why go on?"
During the fourth stage, the grieving person begins to understand the certainty of death. Much like the existential concept of The Void, the idea of living becomes pointless. Things begin to lose meaning to the griever. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and sullen. This process allows the grieving person to disconnect from things of love and affection, possibly in an attempt to avoid further trauma. Depression could be referred to as the dress rehearsal for the 'aftermath'. It is a kind of acceptance with emotional attachment. It is natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation. Oftentimes, this is the ideal path to take, to find closure and make their ways to the fifth step,
Acceptance.
Acceptance "It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, individuals begin to come to terms with their mortality or inevitable future, or that of a loved one, or other tragic event. This stage varies according to the person's situation. People dying can enter this stage a long time before the people they leave behind, who must pass through their own individual stages of dealing with the grief. This typically comes with a calm, retrospective view for the individual, and a stable mindset.
****
When those of us who have haunted this discussion group for a few years see newly diagnosed folks come here, scared, shocked, and trying to figure out what their future will be, we do see evolution in many that does seem to follow the 5 steps listed above.
I wrote often about this at my blog including my attempts to work through it at 6 months when the future seemed tenable but not desirable and I was contemplating suicide. I didn't really seriously consider it as it would have been selfish when my wife was simultaneously in a fight for her life with stage 4 cancer (she got through it too).
My own view of the 5 stages and my decision to persist with an MG altered life:
http://riverroadrambler.blogspot.com/2012/11/skipping-through-stages-of-grief.html
My many comments and progress reports in 2012,2013 leading to full remission from MG a 15 months ago that is still holding. If there is any value in these, it is that, for whatever reason, the path I took through MG treatment has put me in full remission and was guided by the World's Number 1 hospital system -- The Mayo Clinic (I spent most of my life working there in medical research and medical systems so am rather pleased with US News and World Reports 2014 #1 ranking!)
https://www.google.com/search?q=myasthenia+gravis+site%3Ariiverroadrambler.blogspot.com&oq=myasthenia+gravis+site%3Ariiverroadrambler.blogspot.com&aqs=chrome..69i57.32055j0j4&sourceid=chrome&es_sm=122&ie=UTF-8#q=myasthenia+gravis+site:riverroadrambler.blogspot.com
Good Luck
Ok, so maybe I am just having a negative moment... definetly need nap #3 for the day to get more positive...
Congrats on your remission...I am not going to lie, i envy you!!
Enjoy every minute of it..
Maureen
Cj
Regarding the writings of Elisabeth Kbler Ross and actually being stuck with disease (and in my case a rather grim prognosis, since my MG was caused by cancer), my words to live by, which guarantee determination, are as follows: Practice radical denial, screw acceptance, and exercise whenever you can.
I figure I am ill enough that no one can accuse me of being cavalier for such a plucky attitude. I went from being upright and somewhat operational to being too weak for the recommended chemo within 11 days during a January hospital stay, meaning I should be dying just about now, but am now on that very chemo cocktail I then needed. I exercise whenever I can, which is way less often and much less vigorously than I'd like.
Elisabeth Kbler Ross said at the end of her life: "My only regret is that for 40 years I spoke of a good God who helps people, who knows what you need and how all you have to do is ask for it. Well, that's baloney. I want to tell the world that it's a bunch of bull. Don't believe a word of it." If she can reject, well, everything that motivated her, I feel free to tweak to the concept of her stages.
Please, note, however, that I am not rejecting the idea of God by quoting her to make a point on how I choose to face MG and Stage IV pancreas cancer. In fact, I feel less a materialist and more of a believer than I did before, simply from having witnessed God's love through the work of others in my life. I wish never to insult others' religious beliefs, and if the 5 stages work for you, that's great. They just don't work for me.
My plucky attitude, words to live by, and creative use of the stages keep me going. Someday I will be podiuming in my age group at the running races. ;-) More importantly, and why I have altered my attitudes and beliefs, I want to keep being the mom by babies (27, 19, 16, and 10) need.
Pluck, peace, and oodles of hugs. --Elinor
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
Robert Frost
I think that is BY FAR THE BEST QUOTE I'VE SEEN ON DS OR ANYWHERE FOR THAT MATTER...
" Practice radical denial, screw acceptance, and exercise whenever you can. "
So many folks have told me that continuing to deny and failing to accept are my biggest issues with MG. I have fought back where and when I can, but truthfully, its my spirit to not let things get me down and MG hits so many areas, muscles, vision, speech, it was a very hard road to travel. Exercising, well lets just say a walk to the mailbox everyday is exercise right now.
I will keep those words close to my heart.. Someone who agrees, we don't always have to accept things as fate.. Ive now been diagnosed with cancer 2x in ONE WEEK, following the thymectomy that was supposed to make me well... irony huh? yes, they think they got everything, but well.. we know how that story goes. I have a family, a job and frankly things to do still. Although, I cannot DENY the diagnosis, I can choose not to let it define me and Acceptance, well lets just say that has never been an option.
Thank you, your words give me hope.. xoxo
god bless you ...
Maureen
Russ came to the site with a history of positive serology, talking of suicide in his journal and according to postings went on to play with his steroid dosage from 0 to 60 mg, from day to day, to "see what worked" since he was "the best judge." Meanwhile his neuromuscular specialist was out of town and his wife was entering intensive treatment for breast cancer. He took umbrage at suggestions that this was not the usual or best way to treat MG. As he reportedly got better, he suggested that it is the things people are doing and not doing that keep them from getting well, that people who are seronegative may not have MG, even after having been diagnosed, and people were lucky to be seronegative, because it might be something else and he was seropositive and knew he was in for it. (As most of us know, the differential diagnosis for seronegative MG includes MS, ALS,and other neuromuscular problems, whose course is worse than that of the usual MG.) Now, as then, it seems he is on to boast of his remission and proselytize for his manner of treatment, and he downplays his early experimentation. He once posted a list of all the other things that could present with false positive serology, maybe he has one of those; and spontaneous remission was possible in the days when there was no treatment, making treatment response trials for MG difficult even today.
He emphasizes his long connection with Mayo research, but his postings show a lack of true understanding of the material he cites and its implications. He has a BS from a small midwestern college and attained no advanced degrees during 27 years at Mayo Rochester, working in the GI Motility Lab. With this background, he presents himself as the calm scientist among desperate people. His presence in the past has been destructive and many people quit posting, some who returned during his absence. He acknowledged there were complaints to DS, and some of his postings were removed both before and after his last absence.
Because it is important for people to feel free to express their opinions, especially in journals, it must be difficult for DS to permanently ban anyone. But we, as a group, depend on one another as a lifeline, more so than I imagine most groups on DS do, and the losses have been some of our most valued members. Many keep in touch in other ways; still they are lost to the group as a whole, especially to newcomers, although we have tried to gather some of our postings and scientific literature in the Links Group and you can still find their postings there. Although we can "ignore this user" wouldn't it be less detrimental to the site if he would just go away?
My own background is completely open to the public, although I have never detailed it here. Since I am questioned, I will mention some of it. My own opinion is that, if one can get past the medical jargon, medical research is not terribly difficult to understand--just each field has its own precise words and meanings that take a while to pick up. I am making that attempt for MG and have been improving over the past 2 plus years
By the way, I do have an extensive formal education after my BS at a state school in WI going from the farm to college on a National Merit Scholarship. Grad school: two years at UW-Madison; 1-year at U of MN, and dozens of classes in the Mayo medical school and Mayo graduate school, as well as local colleges and tech schools. The U's were advanced math and physics; Mayo was biology and medicine. The others computer science, electronics and engineering.
After being away from school two years for military obligations, I no longer wanted others to control my educational direction. I realized pursuing an advanced degree meant the school was in control of my education rather than me choosing what I wanted or needed, so I didn't.
I took Mayo grad/ med school classes to support 10 years of work in digestive diseases research, 5 years in cardiovascular, 3 in renal and allergies, as well as 6 years in research admin at Mayo Clinic--Rochester and lesser involvement in several other areas. I had to learn the medicine for each to do the research role I had.
I also spent 5 years as a part time paid consultant at Baylor (Houston) --neonatal research, and also 5 years at U of Missouri-Columbia in GI surgery research. I have well over 150 semester official credits at the grad school level and have audited numerous classes while at Mayo as part of my just-in-time education to support the medical areas.
i took all of the courses the PhD candidates took in statistics and the how-to's of research; was a member of the journal review group analyzing research articles in GI, and often did GI peer-reviews of scientific research journal submissions in my specialty.
Mayo paid me wonderfully and Mayo physicians and researchers treated me wonderfully because of what I brought to their programs -- an extensive background in math, physics, chemistry and computers. They accepted that I had to learn the medicine side on the job and spent time personally explaining the details of everything medical--much better than the classes.
My 100 plus research publications and publications were primarily in the 80s when I worked with the digestive researchers and I was the science/math/computer guy for those projects. I always joked they included me to point the finger at if the analysis techniques done by my computer programs and instrumentation and measurements were found to be flawed.
However, mostly I learned how to do research; how to use the vast Mayo medical library (I still use it) and how to ask questions of doctors without being intimidated and how to persist until they actually answer you or tell you they don't know.
Neurology was new to me, so since MG diagnosis in May 2012, I have been reading everything I could find on MG. My education is ongoing and improving. Of course, having many friends at Mayo, I, for instance, was able to talk to endocrinologists, GI specialists, and others about prednisone as I used it for about a year. So, my taking control of my own medication dosage was well founded in knowledge of experts. And of course, Mayo has everything published on MG in their library in books, journals, online, etc.
EVIDENCE BASED MEDICINE IS OUR BEST HOPE TO CONTROLLING MG.
SELF KNOWLEDGE IS OUR MOST USEFUL TOOL IN GETTING CONTROL.
You too can learn about MG at whatever level you choose. Learning about MG and taking trying to take control of it was important for me.
For me the process is ongoing. I am a success story right now-- beyond even my own hopes as i actually am one of the 15% in remission. I was happy to get control with prednisone and expected that ongoing treatment would be my future with the battle to find the lowest effective dose ongoing, which of course I would be titrating myself under the GUIDANCE of neurologists, endocrinologists, etc.
Good Luck
Finally, every person here who has had to delete a cruel or insensitive comment or write a report to DS needs to feel comfortable that similar behavior will not be revisited.
I hope your treatment goes well. I can't imagine how difficult it is to go through it. I think about you often and how fate makes paths so different.
As to some or maybe many doctors being obtuse--I agree. They are the gatekeepers for our medical treatment -- so they certainly can be obstacles to our care. In their defense, they are overbooked, overworked, and too often have very few tools at hand for many diseases. And not only that, they are human beings with the frailties, foibles and flaws of us all.
In my working with doctors, diseases, medicines, and treatment, I soon realized that from their own point of view, they are quite aware of their shortcomings and medicine's shortcomings and react in different, completely human ways when we, as patients, fail to respond to the "standard" treatment, or question it. I was lucky to find someone who was willing to understand me.
In my personal world, where control of my own destiny is a very important principle, I chose to try to maintain that in my MG treatment, not expecting very much more than what I could find on the internet in the way of treatment from my doctor. I did hope that with dozens of MG patients, she would be able to verify some of the prognosis stats and recognize my progress--however she explained that I could do that myself.
I would not be able to cope with what you are handling. You certainly are a stronger person. Good Luck
Xoxoxo
M