I have not but would if harm resulted. It is the only way in the US to make change. No pun intended about the bottom line.

I'd be really careful about it. Especially since there are so few neurologists to begin with, even in the large metropolitan area in which I live. I was misdiagnosed once and I don't even think about it. I just went to another doctor. The law of two feet does give them some incentive to do a good job.

I have a few core doctors whom I trust and who have been very helpful to me. When I have a negative experience with another doctor I talk to them about it. They have always agreed with my assessment of dismissal or in one case arrogance and have helped me get to someone else or helped me understand my choices. I think by discussing it with them it also lets them see the limitations of some physicians. I think in this way doctors aware of other doctors does have an influence down the line. They are much less likely to refer someone to one of those doctors in the future who needs the type of help I was seeking.

I did write a request for a review of one incedent that happened in a hospital setting where my pre-surgery information was blatantly ignored by one doctor. I was assured the reason for this was addressed. I also was informed by another doctor that while I do not have the ability to request a certain anesthesiologist before surgery I do have the right to refuse one. Good to know. Knowledge is power.

I also make it a point to reinforce to my doctors good referrals that are helpful to me and to let all staff who treat me in a way that is helpful know I appreciate them. Having worked in the health care field for decades before my retirement I know the stresses of health care from the inside out. I also am aware there is a wide variance in personality and ability in the medical world. The keepers are the ones with high ethics and knowledge who are curious and treat you as an individual and with kindness. They are worth their weight in gold.

If you have been referred to the doctor or hospital in question, express your concerns to the referring doctor. This is both to get another referral, and to bring attention to the problem. It will also give you some feedback as to whether or not to take it to a higher authority. Sometimes the referring physician can intervene to straighten things out.

Hospitals have patient advocates and they may be very helpful. One was instrumental in delaying a discharge which was premature and would have resulted in readmission. Our family went as far as mediation in a suit with a hospital where my father was given a medication both documented in the medical chart as causing problems and which he had specifically warned them about. It was given in the OR while he was unconscious, and he was not told. The consequences were disastrous and almost fatal. He had MG.

We do not have a lot of energy to spend in resolving conflict, but resolving issues and educating people may save the life of the next person in our position and make the health care team more alert both to our vulnerability and theirs. If there are mistakes, corrective action needs to be taken. No one likes to make a mistake and some may need help understanding what is going wrong.

A few times over many years I have had doctors who made mistakes, misjudgments, or who ignored symptoms that were serious enough so I chose to do something (in two cases it was with my mother). I wrote a letter in each case to that doctor, explaining the details of what occurred and why I was concerned.

I firmly believe that as a patient, paying for a service, we should expect good quality. In each case where I wrote the letter, I did get an acknowledgement that the doctor had learned something useful from my letter and the experience, and in fact in one case an apology.

Confronting a doctor is a problem for some folks -- but if you remember they are people who are trying to do a good job and are limited by their own experiences, and their own problems, and that you are actually hoping the outcome improves things, it is not impossible.

It helps to remember that MD does not mean God.

After bad side effects from surgery, I confronted the doctor who never told me that these side effects were common. They might be common and general knowledge to medical professionals but they were not to me. Perhaps if I had known that these side effects will last as long as I live, were known to me at the time, I may not have gone ahead with the surgery or even have got a second opinion. However, hind sight is always easier after the fact.

I did receive a heartfelt apology from the surgeon. Didn't change anything but it did make me feel better and I am sure he will change what he tells patients about their surgery.

I believe if you are unhappy then you need to let them know. If someone has referred me to another specialist and I was not happy with them, then I let the referring doctor know. They should know who they are recommending to their patients..

Jules: Then they wonder why we check out so much medical information on the Internet and question them based on it.

Thank you - for your compliments to us all. I feel the same way as you:
''without you, I may have given up''.

When an incorrect diagnosis is made, or some form of harm is done? Yes - this must always be addressed.
To deal with this situation? You have some great suggestions yourself, and so does everyone else - who posted above.

I have considered legal action, several times - against shoddy practicioners. And: also in several situations, where cautions about treating MG patients - were blatantly ignored.

So far, I have not followed through, for all of the reasons, that others have listed above.
Either: the service was rare, in my area - and I really needed this service, close by.
Or - yes it happens - no lasting damage occurred - and yes it happens - doctors are human too.

I am not usually so forgiving, about serious matters like these.
I did make a complaint against one doctor at one hospital, and several months later? That doctor was ''no longer affiliated with this hospital''.

I factor in the stress and aggravation, and as b. says: the lack of energy to tackle matters like this.
I look at it, like this. So far, no one had injured me seriously enough, for me to follow through with legal action. (Some of you might argue differently.)

But God help anyone - who damages me seriously, or kills me.
My wife is a lot more determined - than I am!
- Ross

I think that you have to ask yourself what you want to accomplish with that action.

Are you trying to punish the doctor for his mistake?
Do you want to stop this from happening to future patients?
Are you expecting monetary compensation for it?

Also, try take the emotion out of the events and examine it closely...

What "real" damage or injury resulted from the action or error?
Who besides the doctor, would suffer as a result of a suit?
Was there malicious intent or blatant disregard for your health and well-being?
How much similarity is there in the symptoms of MG and the wrong diagnosis that was given?

I think that there is so much to factor in with a situation like this. Honestly, medicine is a science but it is not an exact science.
Doctors are human and they make mistakes. Much of medicine is based on trial and error so you can't necessarily fault a doctor for acting reasonably and with good intentions. Or being wrong unless there is a reasonable expectation that it could have been avoided. If the doctor didn't do any research or was performing procedures without previous training, etc then you have a different story.

I sympathize with your situation for sure. My ultimate concern though would be how much time, energy and money you will have to use up on a suit. Those things are so precious to most of us with MG. The stress of a suit may ultimately do more harm than good to you physically and mentally. Plus there is always the possibility that it won't be a successful endeavor.

For me, I am unlikely to take that kind of action unless it resulted in serious or life threatening harm. That is a personal decision though. Good luck with this. I wish healthy days/years of good health for you.

Angie

P.S. If the doctor is a member of a large group, clinic or hospital I would absolutely make sure that the partners or executives are aware of the problem and seek their assistance in a resolution.

I responded to a hospital survey re neuro #1. I should have filed a complaint. He called me neurotic and prescribed Xanax. I couldn't talk, etc-all this was before my thymectomy for thymoma. When I called to ask if I could take more Mestinon because I was slurring my speech, I couldn't get past the assistant who said "you know your body". Really? I still don't know my body. Or rushing me to do the test for ivig on my birthday and then not scheduling it before surgery. I'm not bitter, but if I had strength then, this is the type of action that should have been reported. I was so sick then. I'm glad I switched neuro's ! I'm on #3, assuming my insurance situation gets resolved.
So, there's never a good reason for disrespect. Some docs think they are gods.
Be well,

Thank you everyone for your replies - I suppose each case poses it's own reasons for and against? On the one hand I wouldn't want the responsibility of a Doctor; they have to make their judgement and ultimately stand by it, which must be difficult enough without pressures of harsh penalties if they make a genuine mistake but on the other hand I wonder how some of you felt/coped when I read some of the stories on here - I think I may have felt wronged in some of your shoes and I feel some of you would have had better treatment and respect if you were an animal!! I have honestly been shocked and saddened by some of the stories....but also hugely in awe of the determination and persistence you showed when I think I would have just scurried away!!

I personally don't think my case warrants any complaint - my first Neuro could well be right in his diagnosis and I may not have MG but If (and its still an "if") my muscle/nerve tests prove MG I would like my first Neuro to know purely because he was so adamant that I do not have the disease and refused to do any test other than the AChR antibody test based on that judgement - as I said, he could well be right but when I saw the Neuromuscular Specialist and he felt my symptoms and history are "Highly Suggestive" of MG it shocked me how different a Doctor's (and Neurologist's) judgement can be!

It also makes me wonder what the actual statistics of MG are - it seems to be quite common and almost accepted that an MG diagnosis is missed in the early stages and also for those who don't fit the symptoms or tests as some Dr's would like. So is there a percentage out there struggling on with half a life after being told there is nothing wrong with them who are too scared or simply don't have the energy to waste finding the right Doctor?? I hope not :(

Unsure81, there are many of us who suspect we've had MG all of our lives, but was categorized as something else. For me, they always told me I was susceptible to virus's when I probably had MG.
You're right - this group is persistent and determined..once we figure it out, we want to get better!
Be well,

I would definitely be one to try to help others by making a case....but we really have enough to take care of to care for ourselves.
So many people made errors in my case....It would have stressed me out way to mush to get involved.
In fact one thing that a doc did I actually believe caused my crisis that put me in ICU for 4 weeks.
I did call her. I actually was very sweet and told her I had no intention of suing since it would make me worse from the stress but I told that person why I believed her treatment triggered my crisis.