MG and The "Medical Mafia"
 

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 :winner_first_h4h: 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. :Noooo:

Annie

A very quick question! You have just the most awesome sense of humor :Crazy 2: ....Do you think it´s one of the essential coping elements in a fluctuating disease like MG? :eek:

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.

It's not a mafia, because no one benefits from it.
 

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. ;)

I don't see much difference between an agricultural company that uses potentially hazardous crop treatments, to an oil company which gradually destroys the earth, to a cigarette company which continues to produce and sell hazardous products to a drug company that sells a drug with significant side-effects and questionable benefits.

All of those see their profit as their goal and care very little about potential damage which can be a result of it.

The farmers have a responsibility for using those crops, the owners of gas stations have the responsibility for dispensing this oil, small merchants have responsibility for selling cigarettes and physicians have responsibility for prescribing those medications to their patients.

Consumers have the responsibility when they buy those crops, without questioning their source, or when they buy gasoline or when they take medications.

There are certain professions which society sees as protected from litigation-such as judges and even politicians (unless they have performed a serious crime). This should have been so for physicians. Physicians should have been made to know and understand that they have an ultimate responsibility for the life and well-being of their patients which is not and can not be translated to profit or money.

But, unfortunately this is not so. Patients are not seen as people who are suffering and need help, but as "clients" and as "clients" they should be given a good deal for their money. And if they don't get what they want, they will be compensated. When the death of a child can be translated into money, it become a loss of profit, and not a horrible tragedy.

A young man was admitted to the hospital in a grave state. He had a very rare form of leukemia. He was stuporotic with significant metabolic disturbances. The hematology fellow failed to diagnose his illness properly because of a very unusual presentation, but feeling uncomfortable about this patient she called her attending who came immediately.
He diagnosed the disease correctly, did a few more tests and started chemotherapy ASAP. The patient and his wife sighed an informed consent.
This excellent physician took care of him for the next few years and clearly saved his life. He came to see him day and night, got him through serious and life-threatening complications of the aggressive treatment he was given.
5 years later, the patient was alive and well and stopped coming for follow-up visits. His physician received a letter from his lawyer that he is suing him for not obtaining semen prior to treatment with chemotherapy. He now only has one child and can not have any more children.
It's not that there is some treatment he can receive which costs a lot of money that will enable him to have another child (I would be fine with him getting money for that), and it is not that he is losing any profit from not having another child (from my personal experience children cost money and don't bring profit). How can money compensate for what he has lost? and should this excellent physician instead of doing everything possible to save his life during that night done everything possible to save his semen?
I know this specific physician is not going to change the way he takes care of his patients, but I know how shocked he was to see a letter from the lawyer of a patient whose life he saved.

I know excellent physicians, who after similar experiences have started practicing defensive medicine. They no longer see their patients, as patients but as potential rivals in court. They know that if they do not stick to the "guidelines" (even if the think they are wrong) they can be sued.

Some of those "guidelines" and "quality parameters" are the result of lobbying of drug companies and based on very little evidence. Most physicians don't have the courage or are not interested in going against the flow. It is much easier to comply with the rules and have nice laminated cards in their pockets that tell them what to do.

"personalized medicine", is a nice buzz-word that everyone is glad to use, but physicians are discouraged from deciding on the best patient-tailored treatment for their specific patient.

There are still outstanding physicians who manage to work properly despite all those obstacles, but they are becoming more of the exception than the rule.

Equating good patient care with profit is a recipe for disaster.

I once worked for a corporate veterinary practice that had a very large data base of information that was used to calculate maximum wellness and especially maximum profit. They had extensive protocols that were present to maximize profit and minimize risk of litigation. For the most part, they practiced better medicine than most places I have worked because it is profitable to keep your patients healthy. There were cases in which it did not work out well for. I was not comfortable being told how to practice even when it went against my training. I ended up getting fired, which speaks pretty well for me actually. :winky:

If I choose not to buy GMO (genetically modified) corn, that GMO corn will not blacklist me to the organic corn, making sure I can't eat it either. I don't need corn and can't eat it anyway.

But I do NEED health care. That's the difference between other corporations and the medical profession. They should be even more responsible for the decisions they make. That does not mean a mistake should go from "oops" to "no medical license!" It means they simply need to try to do their jobs better.

Everyone should be set up for success!!!

I don't know what it's like to be a doctor. I doubt it's very easy. But doctors CHOSE to go into that profession.

And I do so like the decision you made, Celeste. I don't think being ethical and making profits are mutually exclusive goals! But, obviously, there are many in medicine who think that way.

I called up my insurance company a few weeks ago and asked them to stop wasting money by sending me promotional junk in the mail. That's one thing we patients can do - speak up when we see something that could change.

So, Alice, these two examples show why the medical profession's self-imposed Catch-22 is so counterproductive. And hypocritical.

I knew I had MG but I couldn't find a neuro in my state to give me the treatment I needed unless they "rediagnosed" me, even though there was an abundance of proof of MG.

I knew I didn't have lupus or dermatomyositis but my rheumy won't take those diagnoses off of the table, even though there is absolutely no proof for it after nearly two years!

So, they won't confirm what you do have but won't deny what you don't.

That does NOT let doctors off the hook, nor should it.

Farmers - which is the "stock" I come from - would lose their farms if they left their "jobs" half-finished. They don't even worry about lawsuits on the weekends. Doctors don't even get a talkin' to when they leave us half-finished.

Yikes, am I in a mood tonight. No offense meant to you at all, Alice! I'm just really tired of all of this nonsense. Are they really so afraid of a "perception" of a lawsuit? I think they might need some counseling for litigaphobia. :eek:

Annie,

What I was trying to say is that physicians are a reflection of the society they live in. They are not saints, they are people.

There will always be exceptional people who will fight injustice or go against what is seen as acceptable and the norm, those who ask questions, but the vast majority of the people will comply with the rules.

There are more and more studies that raise serious concerns regarding the health risks of GMOs. When a farmer grows them, sells them to companies which put them in cereal given to young children without marking them, he is putting those children at potentially serious risk. But, that farmer doesn't bother to read the studies, he doesn't bother to check how the approval for those foods was given, he doesn't bother to ask himself why they are banned in Europe. Because it is convenient to use those seeds.

This is not much different from a physician that gives a certain medication because it was approved by the FDA, the guidelines say he should use it and he has a laminated card in his pocket telling him what to use and when.

What you describe, regarding your personal experience is a crime. It has nothing to do with the practice of medicine. If a physician hides a pertinent test result which has a significant impact on a patient's well-being and life it is a crime. This is not a medical error, it is dishonesty. I want to hope that it is rare for physicians to behave in that way, just like it is rare for people walking into a bank to rob it. I am truly sorry that you had to go through this.

I personally have never encountered such behavior, even from those physicians who made serious management errors. I have all my charts and test results. Including a chart in which the nurse wrote- "Dr. Aware", in large letters, because she realized the severity of my situation and wanted to cover herself if something happens. She also clearly documented that she called the physician because she was seriously concerned with the rapid deterioration in my condition, but he refused to come because he thought is was "functional". I have a score sheet with a very high MG score, marked with "?!" and "not putting enough efforts".

Thanks to those charts I became interested in this entity "functional" and the way in which neurologists determine "efforts" (and possibly/hopefully) this may have helped other patients.

I did experience physicians jeopardizing my care from others, but this was (I believe) because they genuinely thought what they wrote, and not because they tried to hide something or protect themselves. As you know facts can be interpreted wrongly. They did not distort the facts, they just "fit" them to their own theories.

It is true that the way to hell is full of good intentions, but I do think that intentions matter. There is a big difference (in my opinion) between deliberately jeopardizing a patient's care and non-intentionally doing so.

It's not that I have a solution to all those problems. But, I think that awareness of physicians and patients is the first step. I want to hope that we will go back to the essence of medicine, and not get further away from it.

I don't expect a doctor to be perfect. But I do expect them to do their job well.

Which is exactly the point I'm making about a "medical mafia." The culture in which they practice medicine is not set up for anyone but those at the top to win. Doctors don't win. Patients don't win. It's got to STOP.

When a patient has to fly through hoops to get care for MG, that's not good doctoring.

When doctors look for loopholes instead of diseases, that's not good "patienting."

I don't have "the" answer either but someone better start looking for a lot of them before doctoring doesn't work for anyone.

Annie,

It seems to me that we agree that the medical system suffers from a serious illness.

We just don't agree on the causes for it.

And, unfortunately, we don't have a good remedy.

I think that there are more and more physicians and patients that are aware of it. (which is good, as this is probably the first step-recognizing and admitting a problem).

It's not only a matter of physicians doing their job well.
It's a matter of how is their job defined, what tools are they given to do it and what are the expectations from them.

If you expect someone in less than 30 minutes to get to know a person, examine him, generate a list of possible diagnoses, order the proper tests and give proper treatment, while documenting everything in a perfect manner, you have unrealistic expectations which are bound to fail.

If you expect that person to be able to do this 10-20 times each day...

But, this is what modern society is expecting from her physicians.

Just for comparison- psychologists who only have to do the first part (get to know the person) are given 45 minutes for each session.

Alice, I think that you make a good point. A lot of people expect too much from their physicians. They expect a magic wizard that can totally cure them instantly. I am reminded of the scene in the old "Wizard of Oz" movie in which it is revealed that the wizard is just a man. He says, "Pay no attention to that man behind the curtain."

To me, the entire "mystification" process has been undermined. I would prefer magic, but it doesn't work.

On the contrary, Alice, I know there are many causes for what's going wrong with doctoring! ;)

When I had my B12 deficiency, for example, I was going to an internist whom I had known for well over a decade. She KNEW me. I kept going to her, telling her how tired I was. So tired that I felt sick. She kept saying, "There's nothing seriously wrong with you." I was so tired that I had to quit my job over it. It ended up being my last full time job.

I was so scared and frustrated that I bought my first medical book. I figured that I could at least put myself through a crash course on the causes of fatigue. The medical book didn't even have the reason I was sick in the "fatigue algorithm," which I didn't know until after I figured it out. I sought out 2nd opinions but no one knew what was going on.

I brought that info back to my internist, along with my suspicion of having a B12 deficiency. She wouldn't even test for it. So I then put my thoughts in writing and she finally agreed to run the test. About a week later, she had put a message on my voice mail that I had a B12 deficiency - please call for an appointment. I also had a high homocysteine level.

I had parasthesias, some of which never went away because treatment took too long. I was feeling faint all the time. I could not stay awake. I had early onset dementia. For a doctor who had practiced that long and was so smart, she should not have been so dismissive of my concerns.

So that situation only took two years, a bunch of doctors, lots of money, a loss of a job and so much more than I can express - like a loss of trust - and I still didn't know WHY I got the deficiency until a few months later. And I honestly believe that it is during this time period when my lifelong MG took its turn for the worse. As you know, you need B12 for the acetylcholine biochemical pathway.

I did BEYOND what most patients do to help themselves. I KNEW my doctor and she KNEW me. I was crystal clear about my symptoms. I sought out the second opinions. Ironically, it was when I asked my Mom if any of my relatives had been as tired and sick as I was when she told me that my Uncle had pernicious anemia. I didn't have PA but a lack of stomach acid causing my deficiency. But when I read the symptoms of PA, I KNEW I had a B12 deficiency. It just "fit." I've trusted my instincts about medical issues over a doctor's facts ever since.

I don't have unrealistic expectations of doctors. And, I should add, that even though I felt the need to move on from that doctor years ago, she is STILL my internist. I FORGAVE her for being human and moved on.

And she apologized to me. She now considers a B12 deficiency anytime a patient is tired.

Also, I have very good doctors but even they have to work within a very imperfect system. I have known my doctors for a LONG time.

So, PLEASE, don't assume things about what I, as a patient, have been willing to do, to put up with, to work towards to have the very BEST relationships with doctors.

And what about patients who don't have a medical interest, who don't know how to figure out what's wrong and who can't afford to keep going to a doctor over and over again? I honestly believe that there are many doctors who are not trained to be good diagnosticians. Should we all simply sit at home, waiting to die because we expect to get help when we see a doctor? I know doctoring is not as easy as making a "wish" but it should NOT be this hard either!!!

Annie

And just a word about farmers. There are a lot of them who do bother to know about their crops because it's not only their job but their LIFE. I find that to be a very ignorant statement that they do things because they are "easy." Their families live on the farm. They feed the farmhands who help them, even though they often can't afford to feed their own family. And they do whatever it takes to create the best crop they can, even working all night.

Take a gander at the pic below. That's my grandfather. Do you think he did things because they were easy? Nothing was easy. That's a "drag" being used on the fields, in case you thought he was just hauling wood home for a fire. There were no pesticides, no GMO's and no corporations breathing down his neck. Only hard work and a hope for a chance at survival during the Depression.

There are a lot of prejudices out there about all sorts of people. I KNOW many farmers. So many of them are trying their best to go organic, even under pressure from a certain corporate giant who pushes pesticides and GMO food.

And there are now requirements that when a product is labeled as organic, it HAS TO BE Non-GMO.

The point isn't the problems. The point is to identify them, come up with a plan or two and to go about fixing them. Blame helps no one but taking responsibility for perpetuating problems does.

My point about the medical mafia (corporations) is that they are not working hard enough to fix their problems and almost seem to enjoy the dysfunctional environment that they have created. Intention is often the hardest problem to fix.

I agree, so what do you think is the reason it happened?

About farming: if all farmers were to go back to the old methods of farming, using only organic methods, it seems unlikely that the production of food would be adequate to feed out 7 billion people on this planet. I don't like artificial stuff in my food. I also want to eat every day. Fertilizers, herbicides, and pesticides have greatly increased production and I am afraid that as a species, we have outgrown the planet's carrying capacity if food is grown without them.

Perhaps it is as simple as the new natural selection process?

Steph and Celeste, I have a visual reply to that below. When man does this to us, it's not a "natural" anything. :cool:

My family farm, and those of my other relatives, are huge. And creating organic food is not as hard as you might think. Sure, we have more people on this planet than is sustainable but there are also resources that are not being utilized, such as freeze drying and dehydrating food to make it last for 25 to 30 years. A lot of food - and water - is being wasted.

Alice, I don't have to guess at why my internist missed my deficiency. We discussed it. She pooh-poohed me over and over again. At one point, she asked, "Do you laugh . . . you know those big, guttural laughs?" Well, that's silly, of course I do and always have. :rolleyes: But laughing is not a cure for the inability to digest and absorb vitamin B12.

I was young, attractive, working and "looked" healthy, so how could I possibly be sick? My symptoms were dismissed due to prejudice, pooh-poohs and labels that have nothing to do with a scientific conclusion.

I've encountered that same set of dismissive "protocols" over and over again. Don't doctors want to do their jobs?

If someone asked me to design a logo for them, would I say, "You don't really want a logo, do you?"

Thanks for the feedback, Alice. You know I honestly do appreciate it. Steph and Celeste too.

Annie

Annie

I didnt know you, your posts from before but having read your recent posts i wanted to say i am very very happy you have joined the dialogue now as your insight and experience has been very helpful for me. Thanks.
Steph

Ok i confess i didnt know, i had to lookup monsanto...when i saw what it was i had to share a recent thought i had that it is sort of crazy that while big corporations continue to make huge profits, we have to have fundraisers to find cures for the illnesses that are in all likelihood the by product of big corporate activities. Seems only "fair" they should pay huh?

Steph, Thanks. A lot of people find my passion for medical issues annoying. ;) I'm glad you can appreciate it. I've had great medical experiences but some of the ones I've had - and people I've known have had - are jaw droppingly horrid.

I'm grateful to know you too. This is such a great group and I'm always interested in everyone's unique point of view.

Yeah, I agree, it's the least corporations can do. Though I do suspect that they could care less if we're healthy, as long as they're making a profit.

I also suspect that the organophosphates are giving more people MG than ever before. There's no "proof" of that, however.

Thanks Steph. that was one of the points I was trying to make.
I wasn't referring to all farmers, but to those who use "round-up ready seeds" because it is much more convenient.

I have another possible reason- In pernicious anemia you expect to have macrocytic anemia. I assume you didn't have anemia.
One of my concerns when they started fortifying food with folic acid was that we will be seeing more and more patients with atypical presentations of B12 deficiency. I knew that every first year intern will put B12 deficiency on his differential diagnosis in a patient with anemia or even just macrocytosis, but without those findings it is quite likely that more vague neurological symptoms could easily be missed.

Physicians are trained very well to recognize and properly treat 80% of the patients-those that have typical presentations of diseases and respond well to commonly used treatment.

They are very poorly trained to recognize atypical presentations, rare disease not to speak of rare presentations of rare diseases. In fact they are trained to rule out those diagnoses that don't fit their paradigm.

Excellent physicians are capable of thinking- what's common is common, but at the same time being aware that zebras and even rare zebras do exist and start thinking about them when things don't quite fit.
Some physicians only consider zebras (which means they are going to ignore about 80% of those common and "boring" patients) and most physicians do very well with horses (and therefore do a good job with most of their patients) but totally fail when encountering a zebra.

But, even excellent physicians who work under the daily stress of modern medicine can fail to detect zebras.

Another problem is that physicians are not trained to think about nutrition (or nutritional deficiencies) unless there is an overt clinical picture. Nor are they trained to think about environmental exposure. I don't think you will find many physicians who will go like Dr. house to see what a patient is exposed to in his/her house. Most will not even ask pertinent questions beyond-smoking history or occupation.

Also, many physicians do not realize that you can't do away with the subjective experience of the patient, even if you have very sophisticated technological devices and very accurate tests.

As was written in an excellent editorial in the NEJM (following a study on asthma patients)- patients don't come to their physician complaining of a decreased peak flow, they come because they have difficulty breathing and they want relief for it.

Alice, I appreciate that you want to let my physician off the hook but she knew about B12 deficiencies. I was, in fact, anemic. My MCV, however, was in the normal range. We discussed that too. Since a B12 deficiency usually shows a high MCV and an iron deficiency a low one, they sort of cancelled each other out. Which is why she also ordered a peripheral blood smear.

Like my MG, I had a classic presentation of symptoms of a B12 deficiency. And my doctor was trained at the Mayo Clinic. She is also brilliant and listens to patients. She literally had no "excuse" for dismissing my concerns and she knew it!!

A B12 deficiency is actually very common. I personally do not believe it is a zebra. Pernicious anemia, maybe, but not a B12 deficiency. With all of the people taking antacids and acid blockers, I'll bet there are an increasing number of them with B12, iron, calcium and protein deficiencies.

I had three members of my family who were tested after I was and they were below 400. With symptoms. Of course, achlorhydria runs in my family.

I wish I could remember the name of the woman who did a study on food years ago that showed we are not getting the nutrients we think we are from it. B12 was not showing up in beef, for example.

I think it might be hard for physicians to admit that they have a boat load of prejudice when it comes to patients. Like my former pulmonologist, who admitted that she thought allergies were not a valid condition for adults - only for children. Once she had gained more knowledge of that, she obviously changed her mind.

The mistakes start in medical school. It just gets worse from there. There is no emphasis on creative/critical thinking; only on cramming two dimensional facts into a brain. There is such pressure to be "perfect" that no one can learn from failure. And fear of lawsuits might as well be tattooed on their foreheads. ;)

I don't have all of the answers. Probably only a few. But when doctors keep failing over and over again, something is most definitely wrong. Massive rationalizations help no one. When I asked Dr. Weil in 2000 about this lack of critical thinking and no time for pathophysiology in medical school, he got really serious. He was quite concerned about what medical students are not being taught and that what they are churning out are not "thinkers."

Can you imagine how much better doctoring would be if doctors really thought of patients as part of their "team?" How refreshing would that be?

I have noticed that most of the B vitamin supplements have HUGE dosages of vitamins. Alice, can you clarify the folic acid statement you made? Does excess folic acid cause MG symptoms?

I am pretty sure that my B 12 levels were checked.

About a year ago I had started taking multiple different b vitamin supplements (bottles say hi energy blend, etc) as self treatment trying to have more energy, stamina, etc. i have always thought that any excess B vitamins were simply passed so if too much no big deal, just eliminated anyway but noticed recent blood tests have shown very high levels of B12. No dr as ever commented on it but i asked endocrinologist about high B12 on blood and if i should stop taking the supplements and she said didnt really matter, that basically would just be eliminated. Afterwards, i thought if just eliminated (i assume through urine?) then why would blood test have high level? I decided on my own to cut back the b12 pill to every other day. Any thoughts from the educated greAtly appreciated as this really really is not in my wheelhouse!

I am taking a multivitamin, a vitamin C and a vitamin D.
I would really like to hear the rundown on all this stuff.
I only started the D and C recently.

I don't know her, so can't comment on her clinical skills. No, I am trying to understand why such errors occur.

I don't think B12 deficiency is a zebra, but I think rare presentations of it are.

From what you say, yours wasn't a rare presentation.

And it sounds like there was no good reason for her to miss this for such a long time.

I agree that physicians (and people in general) have misconceptions.
We try to correct them as we learn, but I am sure we all have some.

As to physicians and patients working as a team, I think you know my opinion regarding that.

Celeste and Steph, There are metabolic pathways in the body. For example, when I didn't have enough B12, my homocysteine increased. When I got enough of it, it decreased.

If you have B12 without enough folic acid, you can get a folic acid deficiency. And vice versa. It's the same kind of biochemical pathway reaction.

Some people can get too much B12. It's rare but if you have any concerns, you can talk to an internist about it.

Some multivitamins have too much of certain B's, such as B6. Too much B6 can be bad for anyone with nerve issues, like a neuropathy. Mrs. D. is very knowledgeable about all of this stuff.

When you take vitamin D, you should have it with calcium and magnesium. It's not absolutely necessary but those vitamins work well together. ;)

When you take iron, Vitamin C helps to absorb it. If you take Vitamin C with calcium, you can keep the calcium from being absorbed. So there are certain vitamins that, as singular supplements, are better to take at different times.

Is this making sense?

On the issue of too much B12 in your blood, it's kind of like having a glucose test after eating a chocolate sundae. Your glucose would probably be through the roof. My B12 is always high because I supplement on a daily basis.

If you have symptoms of a B12 deficiency, you should be off of B12 to get an accurate reading. Or a smart doctor :cool: can order homocysteine and/or methylmalonic acid, which are often high when you are not getting enough B12 to your tissues. It's not always the case during a deficiency though.

The kind of B12 I take - and have to take - is sublingual (literally meaning "under the tongue") B12. It is put under the tongue and absorbed directly into the bloodstream. Not unlike nitroglycerin. I can't absorb it well through the GI tract.

B12 is stored in the liver as cyanocobalamin. In order for your body to use it, the liver converts it into methylcobalamin. Some people do have a liver problem that causes a low B12 but it's more rare. The type of sublingual B12 I take is methylcobalamin. B12 shots are cyanocobalamin and still have to be converted by the liver before the body uses it. My B12 was not going up much at all on the shots but did on the sublingual. My symptoms weren't improving either.

When you take B12, some is used by the body, some is stored and the rest is urinated out. When you take sublingual B12, it's about the same thing but the body gets more of it immediately.

I could drone on and on because I did a lot of research on it. A woman named Rose did too but she is no longer here on the forums, which is unfortunate. Sublingual B12 can also help after you have any peripheral nerve damage, like after birth, surgery, injury or when you have shingles. It helps to heal the nerves more quickly. Also, when people get Bells Palsy, the combo of Pred and B12 help resolve it more quickly too (based on studies).

As far as multivitamins, I take children's chewables. Yeah, that's right. ;) I can split the amounts up during the day and then I don't get too much of ones like B6, which makes my neuropathy very unhappy. And they absorb better for me.

I get my supplements at www.iherb.com because they have discounts and free shipping past a certain amount. They have good brands and good service.

If you guys have more questions, it might be a great idea to start a new post. It's amazing how many people want to have the best nutrition they can. I like to get as much as I can from good, organic, whole FOOD!

Alice, Yes, I'm very appreciative of how you work with your patients. The fact that you don't feel well, struggle daily with all sorts of issues and still have time to respond - especially when I'm challenging you and vice versa - is beyond admirable. You know how much I respect you!

Annie

Thanks Annie,

I would love to know more about the nutrition/nutritional supplements you and others are taking.

I think it is a great idea to start a new thread on that.

Yes, I am very interested too in what vitamin, change in diet and supplements everyone takes and do they think it helps. I read an article a few years ago about research at the University where I work that discussed why some individuals carry the genetic markers for a disease but do not get the disease. They hypothesized that many people may carry the genetic marker but only 70% or so get the disease because of genetic expression. And the genetic expression was due to environmental factors such as air, water, nutrition and even the effect of stress changing the chemical composition in our blood. Makes sense to me.

Kathie