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...
I am a reluctantly newly diagnosed, seronegative retired MD. The doctors have been reluctant, I have wanted to know what was going on. This is what I have learned over the past 30 years of symptomatology:
1. Doctors are human, don't we all know it. They like to see new patients in the morning when the doctor is fresh, but that is not the best time for us for diagnostic purposes, since we are too.
2. If you have eye troubles, try to see a neuro-opthamologist (when your eyes are tired). They see more people with myasthenia than most doctors and they don't have to worry about whether symptoms are the result of other organ systems i.e. heart and lung disease.
3. Doctors usual routine with new patients is "chief complaint" "present Illness" "medical and family history" "impression (differential diagnosis, hopefully)" Then there is the decision of testing and treatment. Make your chief complaint short and personal. ie : "I had to quit running marathons because I kept falling down" "It takes me four hours to do the dishes, because I have to stop and rest" "I'm scared to cross the street for fear I'll fall down or the light will change before I can make my feet move across" "I can't wink at the waiter without leering, because my eyelid won't open fast enough." Be ready with dates of notable symptoms, past efforts at diagnosis, and treatment failure. Also make that succint, The doctor will ask questions if more information is needed. The personal family history they are usually most interested in are heart/lung disease, kidney disease, allergies, diabetes, depression, arthritis. Sometimes neuromuscular diseases are left out in questionnaires--write them in. Unless it is a neuromuscular disease, don't bother with extended members of the family (anyone other than parents, children, siblings, and grandparents)--that is just a distraction and you want to get the routine over so there is time for questions.
4. Don't leave without a differential diagnosis. If it is "myasthenia or nothing", remind the doctor you are suffering and if it is not myasthenia what options do you have for the treatment of "nothing." (Hysteria and conversion reaction are treatable, too and certainly not "nothing.") Idiopathic anything just means the doctor doesn't know what is wrong-- it is not an acceptable diagnosis for an ongoing problem.
5. Doctors don't like to be wrong even more than most people since being wrong carries more repercussions. You may have to be tactful as well as assertive to get what you need. Although some doctors don't like second opinions, most good ones will welcome the input, so if there are problems, ask if there is someone you can see that may shed some more light on your difficulties.
6. If you are seronegative and symptom positive (for whatever the presumed diagnosis), ask if a trial of medication might be helpful in deciding what your problem is. It is sad to have experienced all the expensive tests over and over again when a 50 cent pill told the tale immediately.
7. I am unaware of any other illness with weakness that comes on unexpectedly and responds to rest and/or Mestinon. Ask.
8. Write down what you used to do and want to do now that symptoms preclude--reading problems, sitting at the table in the evening without props, sleep difficulties, etc. Specifics noted by family and friends and demonstrable findings such as calluses in odd places from propping yourself to do activities may help doctors diagnose our rare disease. This might be more useful in a letter if you have not been given adequate time for discussion.
I would like to know if those who are seronegative seem to have a different course of illness. For my father and myself, diagnosis seemed difficult because we never stopped trying to do strenuous activies most people our age avoid. We also seemed to have little warning about onset of weakness.
Thanks to all for being here for one another, I hope this is helpful.
B.
1. Doctors are human, don't we all know it. They like to see new patients in the morning when the doctor is fresh, but that is not the best time for us for diagnostic purposes, since we are too.
2. If you have eye troubles, try to see a neuro-opthamologist (when your eyes are tired). They see more people with myasthenia than most doctors and they don't have to worry about whether symptoms are the result of other organ systems i.e. heart and lung disease.
3. Doctors usual routine with new patients is "chief complaint" "present Illness" "medical and family history" "impression (differential diagnosis, hopefully)" Then there is the decision of testing and treatment. Make your chief complaint short and personal. ie : "I had to quit running marathons because I kept falling down" "It takes me four hours to do the dishes, because I have to stop and rest" "I'm scared to cross the street for fear I'll fall down or the light will change before I can make my feet move across" "I can't wink at the waiter without leering, because my eyelid won't open fast enough." Be ready with dates of notable symptoms, past efforts at diagnosis, and treatment failure. Also make that succint, The doctor will ask questions if more information is needed. The personal family history they are usually most interested in are heart/lung disease, kidney disease, allergies, diabetes, depression, arthritis. Sometimes neuromuscular diseases are left out in questionnaires--write them in. Unless it is a neuromuscular disease, don't bother with extended members of the family (anyone other than parents, children, siblings, and grandparents)--that is just a distraction and you want to get the routine over so there is time for questions.
4. Don't leave without a differential diagnosis. If it is "myasthenia or nothing", remind the doctor you are suffering and if it is not myasthenia what options do you have for the treatment of "nothing." (Hysteria and conversion reaction are treatable, too and certainly not "nothing.") Idiopathic anything just means the doctor doesn't know what is wrong-- it is not an acceptable diagnosis for an ongoing problem.
5. Doctors don't like to be wrong even more than most people since being wrong carries more repercussions. You may have to be tactful as well as assertive to get what you need. Although some doctors don't like second opinions, most good ones will welcome the input, so if there are problems, ask if there is someone you can see that may shed some more light on your difficulties.
6. If you are seronegative and symptom positive (for whatever the presumed diagnosis), ask if a trial of medication might be helpful in deciding what your problem is. It is sad to have experienced all the expensive tests over and over again when a 50 cent pill told the tale immediately.
7. I am unaware of any other illness with weakness that comes on unexpectedly and responds to rest and/or Mestinon. Ask.
8. Write down what you used to do and want to do now that symptoms preclude--reading problems, sitting at the table in the evening without props, sleep difficulties, etc. Specifics noted by family and friends and demonstrable findings such as calluses in odd places from propping yourself to do activities may help doctors diagnose our rare disease. This might be more useful in a letter if you have not been given adequate time for discussion.
I would like to know if those who are seronegative seem to have a different course of illness. For my father and myself, diagnosis seemed difficult because we never stopped trying to do strenuous activies most people our age avoid. We also seemed to have little warning about onset of weakness.
Thanks to all for being here for one another, I hope this is helpful.
B.
I have a completely different take on the problems we have with docs and diagnoses: the AMA.
The US, for all its wealth and resources has far too few doctors per capita. This results in a problem of scarcity. Docs are simply time-challenged and have too little to spend with patients. Whether it be from exhaustion, extremely tight scheduling, or some other cause related to the the relative scarcity of physicians, we don't get the time we need as patients.
I struggled-suffered, needlessly-for six months, with six docs, none of whom could determine from my symptoms that my problem was neurological in nature. They didn't even get into the right church, let alone the right pew, even though I presented and described droopy eyelids, nasal voice, severe problems swallowing, chewing, etc. I nearly died choking during those six months.
Finally, upon visiting my second otolaryngologist, his NP sat with me for at least an hour, going through a prescribed protocol used where typical diagnostic procedures fail to produce a diagnosis. She asked me copious and detailed questions, probing ever deeper and leaving no stone untouched. There were physical tests, including sticking my lips with needles, to determine the level of response. At the end of the session, and in collaboration with her doc, she was able to tell me that my problem was neurological in nature. Six months!!!
I was immediately referred to a neurologist and, that afternoon, he diagnosed me with MG. He gave me some Mestinon and, within a few hours, I was able to chew, swallow and talk for the first time in months. I was elated and FURIOUS.
So why is the AMA implicated? The AMA has rigidly controlled the number of physicians our medical colleges train annually. Our needs as a society could easily justify upwards of 200,000 new docs each year.
For the past 50 years, the AMA has held the level to well under 100,000. Citing costs of training and all the rest of the excuses they profer, we have a dearth of doctors. We are fed the line that we want only the brightest young minds out in the field treating us...we wouldn't want anyone but the best treating poor Grandma, right? This is rubbish. A good, hardworking, diligent B student can work on and with me anyday. In the end, it was a NURSE, not an A+ doctor, who determined I had a neurological disorder. It was about TIME. The nurse had the time to give me to investigate. Doctors are too busy. They are too busy because there are too few of them in number.
I really don't want to get on a rail here. I have been disgusted with our medical fraternity and the AMA and our medical delivery sysem for forty years. For a society as advanced as ours, what we endure as Americans WRT our healthcare is poor. We spend sixteen percent of our GDP to cover eighty-five percent of our people. Inexcusable. I nearly died - litrerally - because of a deliberate provider shortage.
And then, people criticize Obama for his feeble effort to provide health care for everyone. He and the rest of the cognicenti know full well that single payer is the only reimbursement methodology that can work to provide adequate healthcare in this country for all. But petty minds, with ears well-tuned to the hubris of the Sarah Palins of the world scoff in ignorance at steps that could provide us all with enough doctors who have enough time to give us the time we all deserve. Had I not met a nurse, I might not be alive today because the docs were sure not forthcoming with a diagnosis. That diagnosis did save my life.
Oh, this stuff isn't off the top of my head. I'm trained in economics and practiced healthcare economics and econometrics for many years. On these matters, I'm not among the great unwashed. And, I'm furious.
Just my 2 cents. :-)
Curt
Thanks for the welcome and your 2 cents. Actually reading your posts encouraged me to join this support group in the first place and I am so glad I did. Both my husband and I are physicians and neither ever willingly joined the AMA or thought much of most medical societies. Actually, our thoughts about medicine as we have seen it practiced lately are not as charitable as yours. The system is sick, but so many have invested in it, it has become hard to change.
Meanwhile, other than advocating which is necessary, I think there are other things we can do to get the doctor's attention. So I am trying to present some strategies which I think might help, based on my experience. I think almost all of us have found our interaction with our disease and the medical field to be frustrating and downright scary. I'm still pretty euphoric to be on a medication that has made such a difference, but know that the rest of the ride is not likely to be smooth. I can only hope that the MG continues to progress as slowly and insidiously as it has for the past 30 years which would take me to 95 not too much worse off than most of the 95 year olds I know! That's what I hope, not what I expect.
I don't know how to change the system, although I have some ideas. I know that practicing is not as much fun, doctors are trained in testing and protocols, rather than how to do a good physical exam and history, medical training is always inadequate for what a physician faces day to day and everyday there is more information to learn.
Since so many people feel weak and tired and old before their time, and our condition is rare (we're the zebra in the "when you hear hoofbeats, don't go looking for zebras.") we need some strategy to make our condition more obvious to our physicians, along with educating ourselves and others about MG. I don't pretend to know exactly what that strategy is--these are just some ideas that have occurred to me thinking back on 30 years of trying to get diagnosis and treatment. I'd make a major effort, then decide whatever it is will become more obvious and try to adapt, then five years later something else would prod me into another major effort to find what was wrong, etc. Even when Dad got diagnosed with MG and I had the same symptoms he reported, it took a worsening of the double vision to convince me that was what was wrong with me as well, and another five years to get treated (partly because I was scared of the treatment and knew I would have to convince a neurologist to get it). Tens of thousands of dollars worth of testing those 30 years and a 50 cent pill would have told the tale.
I don't think doctors are going to solve our problems, although the two of us try to get our two cents in with elected officials--maybe the economists will. More power to you both in your pursuits and in MG.
B.
(I was one of four women in my class-we were called girls, in those olden days--and one of eight in the school. It really was a fraternity then!)
All of your points are well stated and well taken and I'm happy to make your acquaintance.
For the record, I have four first cousins who are MDs, an uncle, a girlfriend who has an MD and a PhD in immunochemistry (which comes in very handy for answering my questions :), so I LOVE doctors, enough so that I want to shake them when I hear them talking the "company line."
Also for the record, my biggest frustration comes from the period of the disease's progress in me before diagnosis. This disease did very nearly kill me. Had I gone into respiratory distress - full blown crisis, as I did two years later - I'd have been dead. Had I choked on a piece of food, I'd have been dead.
During the early days AFTER diagnosis, I slipped dramatically to the point where I couldn't walk. I would literally crawl on the sidewalk in front of the capitol in Albany to get to my office (those gardener's knee pads wear well on sidewalks). Some days I couldn't button my shirts, so I'd leave them unbuttoned...forget about ties, it just wasn't possible.
Through all of it, I fought the disease. My girlfriend tells me not to fight it but to accept it and work with it. Right now I feel failure if I take a Mestinon tablet to palliate swallowing difficulty.
Anyway, my point is, that save for the dedication and time spent by a nurse, it probably would have taken months longer to get a diagnosis from a doc. When docs have only 7 minutes per patient, we can't expect them to get to the root of a problem. After we are diagnosed, then our learning skills to deal with our docs is very important because they serve as a resource. I have an excellent working relationship with all my docs and they like me, too.
I had a tremendous learning experience over the past year with a young orthopedist. I had a bad crash on my Harley one day and broke my shoulder to pieces. With a little sedation, we put the dislocated humerus back into the socket. Next day, I met this guy who started working on the head of that very broken humerus. The outcome was fine and I'm happily back on the bikes (much to his chagrin). But what he told me was profound. He said: "You are a model patient. You never complain or ask for anything unreasonable. Other patients can be downright abusive." That taught me a lot. If anyone didn't deserve abuse, it was this guy.
I never abuse my docs, I bring them gifts and say nice things to them. The problems are not all their fault, if, in fact they are to blame for any of our healthcare delivery problems.
Enough for now, but I am curious, B, about how you could have had this disease for 30 years without having had it generalize sometime early on. You are a real outlier.
Curt
I am also curious to know if there are differences in examination findings in seronegative and seropositive myasthenia. Do people with positive antibodies have obvious or gradually diminishing weakness when tested or are they like me: when as I explained to friends, I'm fine until I'm not. You can't bend my wrist or arm until it completely gives way. And that takes some strength on the part of the examiner. I don't get any warning before I have trouble, I have to anticipate it based on prior experience and the weakness is severe and responds to rest, but I have to sit absolutely still. Even this therapeutic nihilist would rather take a pill and keep going.
Just like in medical school when the guys would talk about female physicians and turn to me and say, "but not you." I am scared when I read about the disease and confused and think "but not me, so far not me."
B.
B
I have asked myself a lot of questions. "When did I start doing my makeup on the couch instead of at the bathroom vanity?" "When did I start using two arms to hold the phone to my ear (Okay, I remember that one)... but, when did I quit resting the phone on my shoulder and holding it with my head to one side?" Noticing these little adjustments I have made are bringing a lot of 'ah-ha' and 'wow' moments for me. I know that I have been adapting to this for at least a year and a half. I found myself on facebook more and more often and I believe that is how I started taking breaks without feeling like I was doing "nothing". Well, NO WONDER ;) (that's what keeps running through my head). I was able to do less and less around the house and excused it as burn-out from my kids a lot of the time. I was accepting that stress and panic were the culprits! I put a great deal of blame on my family, my husband and the fact that I find it very challenging to ask for help of any kind from anyone. I imagine... no, I KNOW, that my MG would have become MUCH worse before I would have learned about it because I was in "Robot mode" most of the time and wasn't listening to my body at all! Now that I am taking mestinon, I have not had as many of the issues from the stress and anxiety I was blaming everything for before. I have not needed a valium, I am not flipping out at the little things nearly as often. I know that the frustration I was feeling physically was leading even the smallest stressors to push me "over the edge". There were many MG symptoms that I was ignoring, until I couldn't anymore. I had noticed that I had a droopy eye, and even took a picture once back in March. I was blessed because gall stones lead me to getting surgery, which I came out of with Bell's palsy (which was almost gone the next day). I have a cousin with MG who lead me to getting tested, and a PCP who had seen MG before, and prescribed me mestinon. They told me that if the mestinon worked I had MG (but if it didn't it didn't mean I didn't ;) it just meant that mestinon didn't work for me). But it did! I was careful not to learn what "worked for" meant with the mestinon... I did not want a placebo effect. Within 30 minutes of taking my first pill, I KNEW it was working. Within 3 days (60 mg 3 times daily), I could not imagine how I ever got through my day without it. I have new symptoms now, and have increased my mestinon to 60 mg 4 times a day.
I wish doctors did/could diagnose with "50 cent pill" as well. I am wanting to know how my thymus looks though, so I do want a CT scan.
My cousin is VERY wise about Myasthenia gravis. She was sero-negative as well. She tested positive with tensilon. (which is discontinued and not being used as a test here anymore). She states blood work comes back negative in around 40 percent of people with MG... and reading posts in this group and others, I believe that sounds correct.
b.
I am bumping this up again for Carla. b.
(I missed it by 6-weeks.)
Glad to be able to read it - now!
deb
and you can find other helpful information on the discussion we had entitiled "Links." Just put "links" in the search box above discussions.
You will find someone in this group that has had similar experiences to yours, almost no matter what they are. Certainly we all understand how sad, discouraged and angry we get with trying to deal with this. Jump in, journal, post, let us know what is going on, tell funny stories, start a discussion. Since we have people from all over the world here, there is usually someone a click away . b.