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...
On Valentine's Day (which is a good time to send love notes to those caring physicians and health personnel, thank you Cathy), I have been considering why most neurologists are different than most pediatricians in their approach to patients in trouble. I remember one particularly arrogant fellow speaking to our group about the superiority of diagnosis by neurologists, being able to pinpoint exact locations of difficulties, etc. etc. and leaving the lecture with the blinding insight that he had said not one word about their ability to treat those difficulties! Not one.
In medicine, different personalities go into different fields. If you are uncomfortable with ambiguity, you certainly don't go into pediatrics where the patient often cannot tell you what is wrong, and can get sick so fast that you can't always wait until tests come back to start treatment. (They can get well quick, too.)
If you need structure and the reassurance of tests and enjoy the mental challenge of pinpointing a lesion based on your knowledge of anatomy, then neurology is a good choice for a bright student. Classical MG that follows the textbook model is still a good fit for patient and doctor, but what about the rest of us? Maybe this is part of our problem. With our I'm fine until I'm not and I don't know exactly when that will be, and now the problem's here and now its there, and the tests are negative, but we are in big trouble--we are not a good fit at all.
That is why, as many on this site have said, we need to get to a place where they see and TREAT all kinds of MG, the classical and the atypical. Certainly testing needs to be done, but it shouldn't interfere with taking care of the need in front of them. We don't need a place where our tests being negative is a slap in the face of the those that developed them or are dependent on them. We need someone to recognize that even the physical exam may not tell the tale of how sick we really are, and we may need to get there fast and there is usually a waiting period; because, just like us, these are rare birds, the neurologists that can tolerate ambiguity. Of course you may find other such scattered here and there, but faced with difficulties, follow Willie Sutton. When asked why he robbed banks he replied "That's where the money is." If you know "where the money is," that caring neurologist, neuromuscular specialist, spread the word. Mine is in Nashville, TN at Vanderbilt Hospital. b.
In medicine, different personalities go into different fields. If you are uncomfortable with ambiguity, you certainly don't go into pediatrics where the patient often cannot tell you what is wrong, and can get sick so fast that you can't always wait until tests come back to start treatment. (They can get well quick, too.)
If you need structure and the reassurance of tests and enjoy the mental challenge of pinpointing a lesion based on your knowledge of anatomy, then neurology is a good choice for a bright student. Classical MG that follows the textbook model is still a good fit for patient and doctor, but what about the rest of us? Maybe this is part of our problem. With our I'm fine until I'm not and I don't know exactly when that will be, and now the problem's here and now its there, and the tests are negative, but we are in big trouble--we are not a good fit at all.
That is why, as many on this site have said, we need to get to a place where they see and TREAT all kinds of MG, the classical and the atypical. Certainly testing needs to be done, but it shouldn't interfere with taking care of the need in front of them. We don't need a place where our tests being negative is a slap in the face of the those that developed them or are dependent on them. We need someone to recognize that even the physical exam may not tell the tale of how sick we really are, and we may need to get there fast and there is usually a waiting period; because, just like us, these are rare birds, the neurologists that can tolerate ambiguity. Of course you may find other such scattered here and there, but faced with difficulties, follow Willie Sutton. When asked why he robbed banks he replied "That's where the money is." If you know "where the money is," that caring neurologist, neuromuscular specialist, spread the word. Mine is in Nashville, TN at Vanderbilt Hospital. b.
While I definitely understand what you're saying about matching the personality to the specialty, I think, even more important, is for physicians to understand basic diagnostics. While it's wonderful for these folks to have great minds and be great scientists, it's worthless for the patient if the doc can't diagnose. And many can't. It almost cost me my life. After screwing around with incompetence and indifference for six months, a NURSE finally got me into the "right church" and sent me to a neurologist, instead of another oral surgeon.
Also (my regular rant) is that for-profit medicine only allows a doc (GP) to see a patient for 8 minutes (how do your friends down there in Tennessee feel about that statistic?). That's insane.
My wonderful Neurologist!
Is at St. Elizabeth's Hospital, in Boston MA.
Wow.
Wouldn't it be something?
If, someday? There was a -
''National Center for the Diagnosis and Treatment of MG!!''
It's chilling, though, isn't it, to think there are only 29,999 people besides yourself who suffer from this misery here in the US.
I agree 8 minutes is insane although I have never experienced it or practiced it, (I was mis or non diagnosed in time frames much longer than that). I know that reimbursement has always rewarded procedures much more than time, and that is driving the cost of care and that hospitals, sometimes even more than physicians, dictate patient care policy (another problem) with emphasis on MRIs and other expensive testing and procedures, and our particular doctor who has gotten to Congress behaves like any other politician. Eventually like the Wizard in "The Magic Hat" we are going to have to hold up a sign that says STOP before we are all turned into baboons and bears. (One of my favorite books to read to children).
But I have been trying to understand the reluctance of neurologists to diagnose and treat our particular problem and what can be done about it. I realized I had been looking at it from the standpoint of someone who's training and practice required very different strengths and that although neurologists in general may be able to handle our medications, they are ill suited by temperament to diagnose and initiate the treatment of MG, especially when we are "atypical." Which gets back to your point that we are dependedent on our primary care physicians to make the call and the knee jerk reaction is to refer due to time constraints perhaps (or other reasons). So whatever the reason, we are often left with limited energy to find our own way and it would be nice to be going in the right direction even if it is 350 miles away like mine. I found it through this support group. So the call is out--where have you found that gem of a physician? b.
''The International Center for the Diagnosis and Treatment of MG!''
Needless to say, I never went back to him. Yet, I could tell he was a very thorough, hard working doctor. Ugh!!!
I was fortunate that my diagnosis was immediate. Sero positive and history of my father having MG. However, I thought my first neurologist would be able to properly treat me. After 1.5 years of progressively getting worse my wife and I began the search. I live a fairly large city with three major hospitals. Calling around to the different neurologist practices I was unable to get any assistance with finding a doctor who could convince me they had the expertise to take over my care. The pat answer I got was ALL neurologists can treat MGmajor frustration!
I was lucky in finding a really good neurologist at Mayo Clinic Jacksonville FL, which is 360 miles one way. She listed in her bio that she had a special interest in MG. She is a really good fit for me because Im someone who needs open and frank communications between both of us. She has no ego and did not hesitate referring me to her mentor who she did her fellowship under, for a consult. They have worked together in getting my MG under control. She also does a great job in communicating with my other physicians. Coordinated care among ALL medical professions to me is critical for any MG patient. I believe the majority of us all have multiple illnesses.
Bruce
Gail
I am grateful for their expertise. My local neuro did two things for me. On the first visit he handed me a prescription for Mestinon and told me to take as many as I needed when I needed symptom relief. I only had ocular symptoms that day so even though his attention to me was inadequate I can understand and forgive since on my second visit with significantly worse symptoms he knew he was in over his head and referred me to MCG in Augusta (a few minutes from Augusta National Golf Club for my golfing friends). I thank God for MCG.
I believe the problem with the MGFA referral is most likely liability and we would much rather they spend their resources on research than defending themselves against someone who says they sent them to the wrong hospital or wrong doctor. But bringing up the problem at the conference is a good idea. Perhaps they have a list of members with their locations that they could use for referral. That would mean members should have a chance to opt out. We may have to get together our own lists, especially for those physicians that are comfortable diagnosing and treating seronegative MG. Maybe those of us who are seronegative could get together and have shirts printed that say "I am seronegative and I have MG" and make our presence known. I am so smoke sensitive that Las Vegas is out on that criteria alone, or I would be tempted to set up the table.
It seems from my limited experience that the MDA is often more helpful in getting you to a clinic or physician with experience than the MGFA. They have more money and they also can provide financial assisstance to people with MG. A great resource. The MDA Clinics which are set up all over the US and I believe there are some elsewhere, have health care coordinators listed (at least the ones I looked at) that can be contacted and neuromuscular speciliasts, some of whom have a particular interest in MG. I was glad to have a name and referral, but I would also have been quite willing to see any other doctor that could begin the process of true recovery.
Thanks to Ross, Bruce, Poppa, and Gail for locations in their areas. I know there are more out there satisfied with their treating neurologists, please spread the word. b.
I have had successful treatment and I am doing great. My neurologist at University of Michigan spends 45 minutes with me and when I call the office they are positive with responses.
Leaving his office last time I said "I wish all of my MG friends could come to you" his response was "I wish all of my MG patients responded to treatment like you do."
I understood that to mean, unfortunately everyone doesn't get well under the same plan.
Ann
TJ