In Anacrusis' post about ptosis, Mike brought up the question about Dr. Howard of UNC being "one of the best" due to him saying one thing in a book and another to a patient.

I have seen Dr. Howard twice. I know him to be intelligent, experienced and very nice. And, yes, he is a highly qualified MG expert. Believe me, I put him to the test. That does not mean, however, that he isn't human. I honestly believe that he has - as many doctors do - a lot of pressure put on him to "obey" the gold standards and guidelines set up by mammoth institutions like the Mayo Clinic. Even so, I would still highly recommend him, though he may not be the right doctor for everyone!

Whether we like it or not, many doctors are under pressure from what I call the "medical mafia." That not only includes doctors and other medical professionals, but insurance companies, other corporations, lobbyists and politicians. Not unlike politicians, doctors are given "incentives" such as grants in order to tow the medical line. The UNC neurology department was given a grant from Mayo a few years ago (again). Let me be clear, however, that I do not believe that Dr. Howard can be bought!!! But this pressure they are under is very real, including the potential to lose their jobs and the reputation they have worked so hard to create.

In addition, there are committees, whose members are often from the leading clinics, who set up guidelines for how to diagnose and treat patients. Many doctors feel pressured, often by HMO's, to not deviate from those standards. Is that fair or right? No but that's a reality in medicine.

For example, a few years ago a gastroenterology committee decided that the Reticulin Antibody for Celiac Disease shouldn't have to be done. Their reasons were many, such as their bottom line and wanting a "magic bullet" test for CD. Even though many patients - me included - test positive to that antibody, they thought that the "cost-benefit ratio" for doing it was too low. So those patients who are told, "No, you don't have celiac disease" might indeed have it and be out there slowly dying from malnutrition.

A patient with celiac disease may not test positive for the Endomysial or Tissue Transglutaminase antibodies that they have decided are the only ones necessary to run. I didn't test positive for those. Not only is their logic behind the decision flawed but also it is not scientifically based. Europe still does that test and they have far more experience than the medically young U.S. does. Do you really think that a doctor would "demand" that a patient get the Reticulin antibody test under those circumstances?

That's only one example. There are so many more in the case of MG, which you guys are painfully aware of.

MG is a clinical, not psychological, diagnosis that is backed up, not backed down, with tests. I don't know why Dr. Howard made the decision he did - only he does. But I do know that a positive Modulating Antibody test, in addition to a positive clinical exam, should make a doctor highly suspect MG. There simply aren't other diseases that would present that way.

What's interesting about the Mayo test for Modulating antibodies is that they say, "it hasn't been cleared or approved by The U.S. Food & Drug Administration." Does that let them off the hook if a patient insists they have MG based on an antibody test but the SFEMG is negative? It also says that if the modulating antibody is positive, that they suggest the "MG panel C test" be run in 6 months if MG is suspected. If it's already suspected, that one test should be enough, especially for an MG expert.

Dr. Howard does say in a book he co-authored with two other MG experts that 3 - 4 % of MG patients have a AChR Modulating Antibody only. I honestly believe that percentage is higher. I've seen it quoted as high as 17%.

Doctors are not perfect. That does not, however, let them off the hook when a patient needs their help IMMEDIATELY due to a highly suspected disease state like MG that could KILL them.

Gold standards, protocols, guidelines and algorithms are TOOLS. They are not infallible and should not be seen as absolutes. How many patients who have MG, or other diseases, have been hurt due to this rigid philosophy?

So, Mike, your sister should believe in her own instincts about how she feels and the obvious evidence that IS there. Dr. Howard is indeed an MG expert and I do respect him but that doesn't mean that he wasn't wrong. Since doctors hold our lives in their hands, they absolutely should make every effort to be dead certain they're right.

And unless you're "in" the medical mafia, there's no way you can truly know what it's like to be under that pressure. The problem with that kind of system, however, is that the patients are the ones who usually end up losing. There needs to be a medical system where everyone wins.

So true and Very well said

Thanks, Steph. This isn't really an easy topic to talk about. No one wants to think that the medical community has puppet strings attached. I've been noticing so many unpleasant changes lately, like odd forms they want you to fill out that dig way too deep into your personal life, pushing vaccines of all kinds at every single appt., not wanting to do testing that is obviously necessary and so many other things that aren't what you went to the doctor in the first place to discuss!

And every single doctor's office is so busy trying to comply with the national requirement to put all medical records online that they're almost doing double the work.

Mike, I didn't mean to upset you in any way. I'm sorry if I did. However, I was simply telling my truth of what I know to be happening out there - after a lot of research.

Dr. Howard, and some other doctors I know, have a hard time with a "maybe" diangosis. I honestly can't fault someone for having a personality, or a fear of a lawsuit, and, therefore, not being able to deal with "iffy" territory. And since that is the area where doctors are often sued, they don't want to give potentially damaging treatments to a patient if they aren't sure of what they do have. And they don't want to diagnose when they aren't confident in the diagnosis - which is their right and responsibility as a physician to do.

If I contrast the MG expert who diagnosed my MG with Dr. Howard, it's obvious that this isn't about facts. My diagnosing doctor was quite sure right away that I had MG. And he was going to do whatever it took to figure that out. What's sort of funny is that he studied under Dr. Howard. So the validity of my situation, and my MG, had nothing to do with facts but with a big difference in philosophy and approach. And fear.

How sad is that? The facts say that I have MG. In my case, the first neurologist I went to was a "renowned" MG expert, who screwed up and dismissed my concerns. Everything after that was an effort by the other neuros in my state to keep him from being sued. Yeah, I have proof of that. My positive antibody test was kept from me on purpose. So these kind of "games" happen all the time.

If a patient has CMS, immunosuppressants would not help them since it's a genetic disease. If your sister and you have CMS, then you could sue them if they gave you drugs for no reason. Could you have CMS and MG? Yes. I have questioned whether I have both too, since I've had MG since birth.

There is an erroneous perception in the MG community that MG is not genetic. That is not true and has been written up about. I know someone whose sister has MG too. This is the best site for seriously looking at how many possibilities are out there for MG and related syndromes.

http://neuromuscular.wustl.edu/synmg.html

As far as the best doctor for anyone, that's up to everyone to decide for themselves. Doctor shopping - what some doctors call "doctor hopping - isn't a great idea because they can think you're trying to find someone to treat you for a disease that doesn't exist. But sometimes you need to do that to get the care you deserve.

Annie

I keep reading….

´You have to find a neurologist that knows about MG because not all are experienced enough to treat it.´

I keep bumping into doctors like this…

´MG? That is not a fluctuating disease, is it?´……..´You know myasthenia gravis is mostly in the muscles of the body and sometimes spreads to the eyes´…..

I keep thinking……

To find a relatively mafia independent, eager, knowledgeable neurologist for a fluctuating disease with so many variants and who at the same time is compatible with the patient and his chemistry, can evaluate correctly constantly changing medication needs, be disposable to the patient for an extended period of time........... would need some kind of superhuman effort as well as divine intervention of any shape or size I would imagine!

Yes!!! I salute all of you who haven´t yet found what you are looking for but refuse to give up. The disease is one book in itself, and for many, the search is yet another!!!

Anacrusis, Yeah, finding a good neuro can feel like a job in and of itself, can't it? What's kind of funny is that MG is unique and should be as easily spotted as a zebra. If I said that to a neuro, would they think I thought zebras had spots?

Maybe simply not paying attention is the problem. Maybe most of them were sleeping in medical school when they took five minutes to go over the one page on MG in their medical books and then proceeded to congratulate themselves for knowing all there is to know about this "easy" and well-understood disease.

Maybe if we patients only understood as much as a doctor does, it would be easy for us to live with too.

Annie

A very quick question! You have just the most awesome sense of humor ....Do you think it´s one of the essential coping elements in a fluctuating disease like MG?

Is that a rhetorical question?

I don't know if it's a sense of humor or if I've gone completely bonkers. Thanks, though.

http://www.bmj.com/multimedia/video/...-overtreatment

Look at it first from the point of view just of MG. If there is undersensitivity of testing (or even just a bunch of wrong and differing "opinions" most of which should be put in a circular file), doctors often must come up with new disease names at whim for which testing is not at all specific. If they actually go to test for these and come up with predictably positive results, they will be "overmedicating" and worsening the plight of or killing MG patients. But at the same time, they are undertreating the actual disease.

I suppose we can assume that the same phenomenon occurs with respect to other real diseases but treating for the medical profession's made-up diseases should hardly be called overtreatment. It is what it is. Stoopid, with two os for emphasis.

And yeah, if you're so stupid that you risk your obviously intelligent patient's life by waiting too long or failing to treat, you should expect to be called on it in one way or another. Why split hairs on whether to use an epithet by suggesting there is a risk that other people will be overtreated if she is treated? I think many of us got physically sicker from lack of proper treatment, possibly sicker from wrong treatment, and exhausted by the red tape occasioned by repeating what one or another person with complete control over our treatment and an equal lack of common sense told us. As you know, we're all told we're smart or "should have known" not to listen or believe what they said when we appear years later in worse condition because of inaction.

They can diagnose empirically (if they're not inclined to use at least just some form of ice pack test and look for ptosis) and treat the way they do for their made-up diseases. Ignoring a test you run because it wasn't approved by the FDA is absurd especially considering there are no tests approved by the FDA for fake conditions and diseases and nobody has a shred of compunction about using those tests. Yes, they should do it cautiously because it isn't perfectly predictive of who needs exactly what treatment but they have to do that for the fake diseases (which invariably don't stand up to scientific scrutiny) too.

It's really a terrible injustice that we are left here debating the finer points of medical ethics and figuring out the most delicate term to use for people who betray trust in such a fundamental way.

Alice, The people who do benefit are the HMO's, insurance companies and drug companies. Even doctors aren't exactly happy with the status quo in medicine, as you would obviously know! It needs to stop being driven by drugs, greed and fear of lawsuits.

Heat Intolerant, When that neurologist intentionally kept a test result from me, I honestly believe he should've had his medical license stripped from him immediately. It was felonious and intentionally cruel and is the polar opposite of what doctors have "sworn" not to do.

It's very sad that patients and doctors are literally pitted against each other this way. What a waste of effort. The irony is that if they had treated me well, I wouldn't have felt the need to file medical board complaints. If I hadn't done that, I wouldn't have read ALL of my doctors' notes in an effort to be accurate in those complaints. If I hadn't done that, I wouldn't have found my positive antibody test.

I know you have been through so much too. I find it beyond sad - and maddening - that patients have to go through so much for decent care.

I think instead of doctor conferences, we need patient-doctor conferences to discuss these issues and come up with solutions. Complaining feels good for awhile but it doesn't help in the long run.

Prejudice, sexism, protocols, algorithms, lack of creativity and so many other things get in the way of a GREAT doctor-patient relationship. One thing is certain, business as usual is NOT working for any of us. And the cavalier mistreatment of patients should not be tolerated under any circumstances!

Annie

I guess this wasn't so "off topic" after all.