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...
Would the "real" myasthenic please stand up!
Obviously, if you can't stand up, you don't have myasthenia.
No, this is not a cruel joke. This is what we are up against when we do not meet arbitrary criteria. I appreciate Russ's link to Mayo's hand book for the insight it provides into our difficulties.
Myasthenia gravis is a clinical diagnosis based on fatiguable weakness relieved by rest. Our histories are bolstered by exam and response to treatment and testing and until all the antibodies are known and all our examiners are skilled and we are tested under ideal conditions that testing will be flawed.
Of course it is helpful to have all the knowledge on hand about antibodies in an autoimmune disease, but physicians often have to work with the best information available, not complete understanding. The neuromuscular junction is so complex and the immunology of our disease is still being researched and complete understanding is certainly not what we have. When you define MG by known serology (positive blood tests), then you will pick up that segment of the clinical population. Not surprisingly that clinical population will be positive on the tests, most of the time
What we have on line are people in the throes of diagnostic dilemmas and treatment woes and failures, some are getting better. We have real patients not blood tests. Will everyone have MG? No. But everyone will need help and the few conditions that can be confused with MG are even less amenable to treatment and they will need even more help.
People who are in remission are welcome as long as they don't rub it in! :-) We appreciate success stories. They give us hope. But their experiences only go so far in helping those who are still struggling. After all there were spontaneous remissions before treatment was available. We certainly do not need to have anyone belittling the trials of the most vulnerable among us, those undiagnosed and those whose testing is negative so far, or making them feel unwelcome to be amongst people with "real MG."
What has been described clinically as MG is evidently a heterogenous group. In addition to those AChR positive, MuSK is known, LEMS is related, there are those with thymoma and those with other antibodies (and some with AChR antibodies picked up on testing not commercially available) and better understanding may someday make definitions and treatment more specific. We want irrefutable scientific evidence, but we may not have the luxury of waiting for it. Death and disability is not acceptable when there is good clinical evidence for MG and there are treatment options. We need to be able to stand up!
Hang in there, b.
Obviously, if you can't stand up, you don't have myasthenia.
No, this is not a cruel joke. This is what we are up against when we do not meet arbitrary criteria. I appreciate Russ's link to Mayo's hand book for the insight it provides into our difficulties.
Myasthenia gravis is a clinical diagnosis based on fatiguable weakness relieved by rest. Our histories are bolstered by exam and response to treatment and testing and until all the antibodies are known and all our examiners are skilled and we are tested under ideal conditions that testing will be flawed.
Of course it is helpful to have all the knowledge on hand about antibodies in an autoimmune disease, but physicians often have to work with the best information available, not complete understanding. The neuromuscular junction is so complex and the immunology of our disease is still being researched and complete understanding is certainly not what we have. When you define MG by known serology (positive blood tests), then you will pick up that segment of the clinical population. Not surprisingly that clinical population will be positive on the tests, most of the time
What we have on line are people in the throes of diagnostic dilemmas and treatment woes and failures, some are getting better. We have real patients not blood tests. Will everyone have MG? No. But everyone will need help and the few conditions that can be confused with MG are even less amenable to treatment and they will need even more help.
People who are in remission are welcome as long as they don't rub it in! :-) We appreciate success stories. They give us hope. But their experiences only go so far in helping those who are still struggling. After all there were spontaneous remissions before treatment was available. We certainly do not need to have anyone belittling the trials of the most vulnerable among us, those undiagnosed and those whose testing is negative so far, or making them feel unwelcome to be amongst people with "real MG."
What has been described clinically as MG is evidently a heterogenous group. In addition to those AChR positive, MuSK is known, LEMS is related, there are those with thymoma and those with other antibodies (and some with AChR antibodies picked up on testing not commercially available) and better understanding may someday make definitions and treatment more specific. We want irrefutable scientific evidence, but we may not have the luxury of waiting for it. Death and disability is not acceptable when there is good clinical evidence for MG and there are treatment options. We need to be able to stand up!
Hang in there, b.
Really, I'd love to know what these doctors think this set of symptoms could be if not MG.
patient: Hey doc, I walk like a duck and talk like a duck, what do you think is wrong with me?
doc: Well, let's test first to see if you're an elephant. Then a giraffe. Then for awhile we'll decide you're a hippo while letting you believe we think you're a tucan. In a few decades when our realities finally collide, we'll consider the possibility that you may be a duck. But we'll still treat you like a turkey.
my muscle weakness is fatigable and responds really well to mestinon- but I'm seronegative and not one of the neuros I have seen has ever done an RNS or SFEMG on a clinically affected muscle so the testing isn't accurate. the docs keep testing my face and arms because they're supposed to be affected first but SFEMG only rules out MG when clinically weak muscles are tested. the knowledge deficit about MG even among "neuromuscular specialists" is absolutely appalling!!
my personal favorites- "you're just hypersensitive about your breathing because you're a healthcare professional" and "you can't have MG because it ALWAYS starts in the face and works down to the legs" - both from physicians at a noted university teaching hospital! the EMG guy at the same place tried really hard too- "we'll do a quick RNS test on your arm and if it's negative then we'll just stop there and not do any more testing." thanks for trying so hard to get answers, doc.
it's only because of my own research into MG that I figured out my diagnosis and got a prescription for mestinon from a family doc so I can walk again. I'm trying to screw up the courage to see neuro #8 this fall in a seemingly endless quest for an official diagnosis. I feel like I'm tilting at windmills.
without mestinon, I literally cannot stand up!
can the real myasthenics please sit down to rest their muscles and will the neuros who ACTUALLY know about MG please stand up so we can know who you are!