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...
https://www.newsweek.com/doctor-patient-visits-1035514
The link above says that a study found that when you talk to a doctor, within 11 seconds from start you will be interrupted by the doctor.
"In primary care visits, 49 percent of patients were able to explain their agenda, while in specialty visits, only 20 percent of patients were allowed to explain their reason for visiting. For specialty care visits, eight out of 10 patients were interrupted even if they were allowed to share their agenda."
"The median appointment length was 30 minutes, but appointments were longer when patients were allowed to explain their reason for visiting at the start of the conversation than appointments where patients were not given the opportunity."
What does that mean? I think it means you need to have a very concise first sentence explaining your visit. If you are visiting a specialist (i.e. neuro) for the first time, you might say "I and my primary care doctor believe my symptoms point to Myasthenia Gravis. " And hand the neuro a list of a few of the worst symptoms typed out that looks something like this: (my initial symptoms)
1. Double vision for the past 3 weeks starting an hour after getting up in the morning and lasting most of the day that requires me to patch one eye to see decently
2. Drooping eyelid for past 2 weeks, relieved if I shut them for a while.
3. Difficulty chewing after the first few bites of food.
4. Difficulty breathing if I walk more than 100 feet.
. Brevity is the important word in the beginning of the visit. Save the long list of problems, the long history of trying to find a diagnosis and the other things that we want to get off our chests and instead figure out how to get straight to the point fast! Remember, a good doctor is trying to efficiently get to the crux of the problems and really does not need to hear our tale of woes, however much we want to tell them about it.
Although it may seem like the specialist doesn't want to listen, he or she has probably read extensively from your primary doctor about the reason for your visit (i.e. suspected MG) and at the first visit is likely just making a quick check to see what tests to order before the real visit later after MG is confirmed (or not) by tests. Doctors rely on tests most of the time nowadays and so rather than talk to you in detail, probably just wants to order the tests first.
We have to learn how to make efficient use of our short time with specialists, and a carefully planned, well organized visit is likely to get us better results than going in and expecting the doctor to take the lead. We need to -- remember we are hiring the doctor to do something for us and paying for results.
Good Luck
Russ
i entirely agree with your last statment. like it or not we are the ones whom hire these doctors, and no matter what the insurance and medicare want in short time, they owe to us to leasing to our problems, it is no way in the world that the time given, they can be knowleagable of our troubles,
if they are unwilling to pay attention or cut us off on our expalnations it is time to look for somebody else, as our lifes are very important to us.
a good doctore will take the time to hear what we have to say, because they like or not, the insurance and medicare by law have agreed to pay for extented consults, and there is no way they can avoid it
so to all. take tour life in your hands and demand the respect that you deserve. if they refuse they are avenues like complaint to the medical boards ect.
best of luck (fighter)
you live in Scotsland, and therefor. being in a total diferent system, so you may not be totaly aware of how the american system works.
if you like to roll with the dices and live at the mercy of the doctors its fine with me, but i wuill always make clear to all of us what the remedies are, this is our lifes and we are in cotrol of it.
best of luck to all (fighter)
Maybe it's the fact that you all pay via insurance, rather than general taxation that gets you so worked up? Can only add to the stress levels and that we can surely agree on - it's really bad for you when you have MG?
That being said, I find it illuminating when people from other countries post about their points of view and experiences re medical care and MG. So thank you, Peter!
- Nan
The problem is, I had no idea what was wrong with me. I only had a list of vague symptoms. I would try to give my doctor a list, and all he heard was the first thing on the list. The first thing on the list was my double vision, so he wanted to refer me to an opthamologist, which never worked because the double vision was intermittant.
I would get irritated and repeat the other stuff. He would test me for multiple sclerosis, and run a blood panel, all of which came back normal.
And then he decided I was a hypochondriac.
After years of frustration, I demanded he refer me to a neurologist.
The neurologist said I was a CLASSIC CASE of MG.
My PCP just didn't care to really really listen.
Finally when I got "classic" symptoms of double vision and a drooping eyelid, I went to an eye specialist who thought I might have MG, did an icepack test (ice on the eyes for a couple of minutes and the drooping eyelid became normal), and then set me up for a blood test which was postiive for MG, I got to a neuro. But by then I was already diagnosed and the neuro started knowing I had MG by blood test. My eye doctor was pretty thrilled to have seen and diagnosed his very first MG case by himself without a neuro involved! My guess is he will be aware of that with his future patients, as will my PCP who apologized profusely for have missed the symptoms for months and really years.
MG is so rare that most doctors don't think about it, and so we get shuffled around far too long when MG is mild or not classic symptoms.
Good Luck
Russ