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.
That is exactly what should and should not be happening.
Calmday
But I also believe we are wasteful of neurology specialist time when we choose not to take a major role in self-regulating our medications.
In my own case, I have goals, maximums, and instructions and warnings about changes, but choose to pursue the goals myself, apprising my doctor of my changes but not expecting the neuro to tell me exactly the dose for each week as I try to achieve the goals.
My prescriptions are of the type 10-60 mg of prednisone daily as needed: 1-8 mestinon pills per day as needed; etc. My family doctor keeps abreast of the prednisone side effects and is proactive about osteoporosis, diabetes, cataracts... having me get tests and telling me how to counteract those (but expecting me to modify my behavior myself).
The vast majority of MG patients are prescribed Mestinon and prednisone to keep MG symptoms and disease at bay. This does work for most of us, but not without an ongoing, lifetime process of adjusting medications to our condition. I don't bother the neuro if I need more Mestinon and I don't bother the doctor if I want to take another try at achieving my goal of prednisone at 20/0 mg on alternating days another time. Having done it before, I know the process, the time delay, the problems and can evaluate how I am doing on my own as well as getting an appt with my neuro, explaining it to her, and being told something obvious about dosage change.
Self regulation under well understood guidelines does work.
Our bits of knowledge and desperation to get better make it hard to heed sometimes. I'm the first to admit!
Thanks for the reminder.
Jeannie
I would add that this is also very important during an ER visit. My doctor is six hours away. My local hospital/doctor has already demonstrated their lack of knowledge of MG.
A crisis is the worst time medical mistakes can be made. We have to have our medical records and MG information ready at all times. You and your family/friends have to be prepared to be your strongest advocate.
Being a good advocate requires good communication skills. The willingness to ask questions and courage to disagree with treatments/nontreatments that you know are wrong.
I hope everyone understands just how important this subject is. Please take the time to be prepared and be as knowledgeable about your condition as possible.
Thank you B.
Bruce
Good for you, keep looking. We can provide some guidance as to what has worked for each of us, and this where you can find out if your treatment regimen is out of the ordinary. That may not be wrong for you, but it does need to be questioned and you are asking the right questions. Now you are looking for someone to to take responsibility for providing the right answers for you and I hope three is the charm.
By the way, Russ's handling of his medications is way out of the ordinary. It has been questioned here and he has chosen to do it his way. "Playing with Prednisone" is a dangerous game. b.
I had excellent medical advice from the best clinic and doctors I know. I read everything available on the disease, medications, treatments, problems etc., and got wonderful advice from people who had already experienced MG through this forum.
I am lucky in that I tolerate prednisone and it has been effective at reasonably low levels and has brought me into reasonable health again.
Treatment progressed as predicted, and along the way I made decisions to forego (although my neuro pushed me in that direction) IVIG or PLEX, and reserve them for crisis rather than ongoing treatment, as they would tie me to repeated complicated, expensive and invasive procedures.
Seven months since diagnosis, I am at a level where MG no longer messes up my life. I am not cured, nor off medications, and am still trying to get to the lowest effective dose of prednisone I can reach,
I have adjusted, and continue to adjust prednisone at my own pace as I aim for the lowest effective dose. How will my neuro know when I have reached that? By asking me the obvious question: How are you doing? and based on my own reply, my evaluation of how I am doihg will suggest I take more, less or the same, Seems pretty straightforward ;-)
Will
MG continues to humble me. Medications and treatments should be taken very seriously and under the direction of a physician well versed with MG. Our available treatments can have devastating short and long term side effects. We have lost members to this disease or to the effects of a weakened immune system. We must be ever vigilant with our care.
Our dearly missed Curt was always quick to remind us that you can be walking miles one day and be in respiratory arrest the next. You can't mess around with MG, so let's all be safe out there!
~sherry
We just have to do what is best for ourselves...and take in consideration of all advice. Annette
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