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...
Many of us have been in the sad position of knowing more about MG than our doctors, or not having our symptoms taken seriously, or being in a situation where we feel inadequately medicated. However much we may understand the difficulty of diagnosis and treatment, that is an unacceptable place to be. At the risk of being considered to be "doctor shopping" we need to get a new physician that we can work with. (Doctors whose specialization is MG understand that their patients may have seen many doctors without diagnosis and proper treatment, especially true for those of us who are "seronegative.")
There is good reason for many of our drugs to be "by prescription only," however frustrating that may be for us at times. Even too much Mestinon can be life threatening, other drugs we take are even more dangerous with life threatening side effects that are more insidious; and all require careful monitoring. Casual prescribing of dangerous drugs like prednisone is no more acceptable than starting IVIG and leaving the patient to determine rate and concomitant medication. In both cases, the patient has valuable input, but experience (and responsibility) is in the hands of the medical team.
When despite our best efforts, we find ourselves in positions with a medical team that has little experience with MG, we can turn to our literature and others' experience here for resources to teach while we look for a center where there is experience. Poor care and unwillingness to learn is unacceptable and reportable.
But where do we report our own blunders when we take care decisions on ourselves? To our doctor? The medical board will have little interest, the doctor may not want to care for someone who is uncooperative and less than honest. Do we really want be our own physician (a fool for a doctor and a fool for a patient, as we were cautioned in medical school)?
After only too many incompetent-to-treat-me neurologists, I run all questions and prospective changes in medication and life style by my neuromuscular specialist. Sometimes I know the answers (at least as far as I have kept up with the literature, etc.), but we are a team. I don't want another incompetent physician on my team, especially me. I have an important role in deciding on diet, drugs, activities, and reporting changes either good or bad and I can switch teams if need be, but I am not my own physician, however good a one I think I might be :-) b.
There is good reason for many of our drugs to be "by prescription only," however frustrating that may be for us at times. Even too much Mestinon can be life threatening, other drugs we take are even more dangerous with life threatening side effects that are more insidious; and all require careful monitoring. Casual prescribing of dangerous drugs like prednisone is no more acceptable than starting IVIG and leaving the patient to determine rate and concomitant medication. In both cases, the patient has valuable input, but experience (and responsibility) is in the hands of the medical team.
When despite our best efforts, we find ourselves in positions with a medical team that has little experience with MG, we can turn to our literature and others' experience here for resources to teach while we look for a center where there is experience. Poor care and unwillingness to learn is unacceptable and reportable.
But where do we report our own blunders when we take care decisions on ourselves? To our doctor? The medical board will have little interest, the doctor may not want to care for someone who is uncooperative and less than honest. Do we really want be our own physician (a fool for a doctor and a fool for a patient, as we were cautioned in medical school)?
After only too many incompetent-to-treat-me neurologists, I run all questions and prospective changes in medication and life style by my neuromuscular specialist. Sometimes I know the answers (at least as far as I have kept up with the literature, etc.), but we are a team. I don't want another incompetent physician on my team, especially me. I have an important role in deciding on diet, drugs, activities, and reporting changes either good or bad and I can switch teams if need be, but I am not my own physician, however good a one I think I might be :-) b.
I am trying to feel my way along and learn when to call the Neuro (who always returns calls), when to turn to my PCP (who I can email) and when to just rely on the experience of the group and my own instincts. I prefer to be as independent as possible without taking foolish chances. You all have helped me so much to learn what is to be expected, what I should watch out for and when I should seek help.
Let's remember Ross tonight. I can't imagine that he has not been here because he is doing well.
Love,
Rosie
I am trying to feel my way along and learn when to call the Neuro (who always returns calls), when to turn to my PCP (who I can email) and when to just rely on the experience of the group and my own instincts. I prefer to be as independent as possible without taking foolish chances. You all have helped me so much to learn what is to be expected, what I should watch out for and when I should seek help.
Let's remember Ross tonight. I can't imagine that he has not been here because he is doing well.
Love,
Rosie
Discussing when we should call and who covers when we can't reach our neurologist is important. With MG getting past the front desk is imperative. A neurologist that says, if you are in trouble, go to the ER--needs to know that is a BIG problem, and you probably will need to find another neurologist.
My neurologist is so far away that I only see him every six months since I am relatively stable, but he is marvelous about responding to email, and before the follow up visits, I let him know what my main concerns are. It keeps our visits, short, efficient, and enjoyable. Not everyone is so blessed. Recently someone he trained has moved to our area, which is some comfort for emergency, but the best thing to do is to try to stay away from emergencies!
In addition to all the good information Bruce has given us, there are other educational things we can do. becca has spoken to the people who would be transporting her if she were in trouble, we can educate our ER staff, have information placed on our hospital charts, so that is there before anything happens. We may bring awareness to the problem and even help someone other than ourselves.
Another rule of thumb, Rosie, besides a falling single breath count, is if you are worried about waiting for a response on line to "should I call my neurologist about this," the answer is simply "yes." As a group we are more likely to tough things out than "bother" our neurologists, sometimes they need to be "bothered." b.
Discussing when we should call and who covers when we can't reach our neurologist is important. With MG getting past the front desk is imperative. A neurologist that says, if you are in trouble, go to the ER--needs to know that is a BIG problem, and you probably will need to find another neurologist.
My neurologist is so far away that I only see him every six months since I am relatively stable, but he is marvelous about responding to email, and before the follow up visits, I let him know what my main concerns are. It keeps our visits, short, efficient, and enjoyable. Not everyone is so blessed. Recently someone he trained has moved to our area, which is some comfort for emergency, but the best thing to do is to try to stay away from emergencies!
In addition to all the good information Bruce has given us, there are other educational things we can do. becca has spoken to the people who would be transporting her if she were in trouble, we can educate our ER staff, have information placed on our hospital charts, so that is there before anything happens. We may bring awareness to the problem and even help someone other than ourselves.
Another rule of thumb, Rosie, besides a falling single breath count, is if you are worried about waiting for a response on line to "should I call my neurologist about this," the answer is simply "yes." As a group we are more likely to tough things out than "bother" our neurologists, sometimes they need to be "bothered." b.
I often think the people who go into neurology are ill suited by temperament to treat MG. I have seen a bunch of them. Those of us who don't want to give up our active life styles seem particularly disadvantaged, because once stable, there is no reason not to try to return to former activities (as they are finding out in Will's study). Buy doctors as well as patients may have to take treatment risks to reach that degree of stability. Not that doctors have to take the treatments:-) but that the treatments may carry greater risks for complications and patient dissatisfaction. b.
There are only 20 private neuros in the country I live. My friend is one of them and doesnt think their competency lies with MG. I found the PERFECT neuro/MG researcher abroad who was happy to give me a seronegative diagnosis last year. But when I came home with a foreign diagnosis it suddenly did not count.
There is one public hospital which has competence in myasthenia in my country but then I would need to be referred there by my local hospital which is also public, and the negative SFEMG in September did not help my chances of being referred there.
And it is precisely because I do not believe I should be taking my life in my own hands that I should be taking any Mestinon unsupervised. In fact it makes me really cross that the neurology department at the hospital thinks its OK to just keep on taking it without monitoring me at all. Thats ridiculous. No monitoring - No Mestinon. The good thing has been that Im working, have a child and feeling gradually much better since last year even before a Mestinon trial.
That doesnt mean I havent been assertive and been constantly working on trying to find ways to figure out how to find a neuro that ALSO believed no one should ever be left alone taking their life into their own hands dealing with severe MG symptoms for 3 years.
Its been an extremely frustrating time with the system but its not likely anyone will find me giving up on finding the professional help that is just right for my needs :)
Calmday
I have given a lot of thought to the irregularity with which MG presents itself in different people and different expectations for "remission" from doctors and patients, and a couple of things jump out at me. First, doctors need to radically raise their standards of wellness. Functioning in a cube farm, for example, is not "well", since as a human being the ability to function in a field, on a hunting expedition, or gathering fruit and nuts would constitute functionality and wellness. Our lifestyles that disconnect us from how our bodies evolved to be used are what have gotten us into a great many of the health messes we are currently in! Second, a while back it occurred to me that there were a couple of us in my run club who, for certain, ran more than we walked, and our walking gaits were affected by this preference for running as a form of locomotion. I had many, many generalized symptoms before my eyes began being affected, even though I didn't recognize what they were until my eyes sent me on a quest for answers. I think it was simply because I used my body more than my face, and I wonder if people who have eye issues first (as is the typical scenario in most of what I read) and move on to generalized symptoms just didn't tax their bodies enough to see them first. I guess I'm wondering if it is a question of math, receptor availability, and contractions, because I get into breathing problems quickly, even though my MG is milder than others', when I run fast because I really start using those voluntary breathing muscles in a way that uses up contractions. I obviously was not as sick as some because I marathoned for 3 years with MG off and on before all systems fell apart, but now I might be falling into the ranks here. My number of daily contractions seems to have been greatly limited since May of 2012.
Anyway, those are just musings.
Calmday, your story is quite vexing. Hugs to you.
Sometimes when you post, suddenly lots of different possibilities that you didnt think of before present themselves as though you yourself had the answers all along :) :) :) Know what I mean?
Calmday
At the same time, we are mostly walking, functioning folks under treatment and the disease is "halted." So the docs are pleased that we are functional and alive, especially in comparison to many of the neuro patients they see who are destined for quite bad futures.
So, our impatience with getting back to "normal" is probably not very high priority with the doctors. As long as we are stable and out of MG crisis, we are likely seen as successfully treated.
Maybe we need to understand that our own expectations might be unrealistic. Remember, we have a chronic condition that, untreated, could kill us, and the majority of MG folks are functioning in daily life -- not thriving, but finding enjoyment in what we can do. As my MN favorite author, Garrison Keillor says, "It could be worse."
Fortunately, I have an open minded pulmonolgist I can count on to make recommendations and guide me when necessary. He actually took the time to study up on MG when I approached him via email and requested that I send him followups of my progress, because he exhibits a key personal trait that keeps him broadminded: curiosity.
I have had my MG that I know of since Sept 2011 and have have had an hospitalization every 3- 4 months since. I have tried prednisone, IVIG and am now on mestinon, cellcept and plasma pheresis every other week.
One year ago I was hospitalized for 2 week with serios life threatening complications from my perscribed prednisone.
The only reason,I write some stay pieces of my unpleasant MG year is to say- Not all or even most that are on this group are so "typical" or treatment " straight forward" when it comes to treatment. Many Are very ill with MG and or additional complicating diagnosis..and some of our members have died.
For these folks watching quietly not not:) Please keep these conversations and support going but be ever so respectful of the dangers.
Great topic-
May we all get a remission of the bulk of our symptoms.
I appreciate your reminder. We have people onsite whose immediate goal is to stay alive and out of the hospital, despite agressive therapy, to people who want to run marathons. As a group we are here for all. Some have more experience with different treatments and some can recommend neurologists in their area that recognize that we are not such a homogeneous group.
Medicine is not betting odds. 99% means 1 out of 100 do not fit the mold--a lot of people--and for each of us we have it 100% or don't 100%. Severity varies, but diagnosis is needed for our treatment.
I look forward to Dr. Cutter's MG directory when available. I think it will be helpful to see where different people are and how they present and are treated. Since it will be self reported it will not be biased to those whose diagnosis is easy. At the meeting in Atlanta in Novembernwhere this was discussed, about half the diagnosed participants were seronegative. I am hoping that the registry will broaden the neurologists knowledge and recognition and acceptance of MG in atypical as well as more typical patients.
I know people hesitate to post because they are doing poorly and don't wish to discourage the group and others who are doing so well, at least a few who had spontaneous remission, and they don't post because they are afraid it will seem like gloating. I like to hear all the stories--those doing better give me hope, those not so well, I not only admire for their persistence, but give me courage that I could too, if things fall apart.
Going back to the main point of the post, we will do best if we have a good working relationship with a knowledgeable neurologist, even better a medical team, and do not resort or feel we have to resort to self treatment. As bruce emphasized, we need to be educated, educators and advocates for our own health--but it sure helps to have someone in the medical field "on our side."
b.
Each appointment I feel out the MGFA Quality of Life Form.. http://www.myasthenia.org/LinkClick.aspx?fileticket=BiunbsOud7E%3d&tabid=291
It is my opinion that our doctors needs to have an understanding how our MG symptoms affect our daily life. We have to make it clear what our aspections are. We have to be honest with our self but always pushing for the best quality of life possible.
Recently I admitted to my doctor that I was dealing with depression. Previously, I could not come to grips to admit that I was depressed about my MG. I am so glad that I am now taking an antidepressant which has helped a lot.
Being honest with your doctor is extremely important. It is also very important that your doctor is also honest with you. My doctor has made it clear to me just what we can expect with the treatments/meds and just what I have to do to self help myself; i.e. being physically active as much as possible and not a couch potato.
Great post..I appreciate everyones input.
Bruce