Additional questions to ask a neurologist / epileptologist

[Jay1]

Here are some additional questions that everyone should have the right to ask their neurologist / epileptologist.


(1) How much money you receive every time you see me? On an average, how many times in a year do you see a patient?

(2) Have you ever received any money or kickbacks or any other benefits from pharmaceutical companies whose drugs you prescribe for your patients?

(3) Have you ever accepted paid flight tickets or boarding and lodging from any pharmaceutical company for any reason?

(4) Did you study nutrition in medical school?

(5) Do you read medical research papers related to nutrition? If yes, how many papers did you read in last one year?

(6) Are there any long term double blind randomized studies done on drug interaction of the multiple AEDs that you are asking me to take? If yes, I would like to see them.

(7) How many of your patients have died from SUDEP? What happened? Were they taking any drugs? If yes, what drugs were those patients taking?

(8) What kind of pharmaceutical drugs do you take yourself and for what?

(9) What kind of food do you eat for breakfast, lunch and dinner?

(10) What kind of food do your kids eat for breakfast, lunch and dinner?

(11) Have you seen movie "First Do No Harm"? How do you feel about it?

(12) Have you heard of Dr, Freeman and Dr, Perlmutter? What are your thoughts on them?

 

[Cint]

Yes, we as patients have the right to ask questions of our doctors. But do the doctors have time to answer these type of questions? I doubt it. I see several docs, all associated with the University hospital. About a week after seeing my epileptologist or other docs, I receive a questionnaire in the mail about my visit to this dr. It does provide a space for comments and several times I have commented about my dissatisfaction of the service provided by the staff. And that is why I go to the University Hospital where research is ongoing. I know I am receiving the best care in this part of the country for my E and Diabetes. Plus, after you see a dr. for a while, they do come down to earth a bit and do share some life experiences with you. At least that is what my docs have done with me. I have asked my docs some of these questions over the years. Been there, done that.

 

[Bernard]

I don't need to ask most of those questions to evaluate a doctor. I've been to doctors that I did not trust and ones that I do. It's not that hard to figure out if a doctor is competent (smart) and compassionate (listens, considers your POV) and will work with you.

 

[masterjen]

I wouldn't even remotely consider asking my doctors any questions of that nature! And if by some chance I did come across a new doctor I felt I needed to ask such questions, I'd be finding a new doctor.

As Cint said most doctors do not have the time to address so many questions of this nature in addition to the far more important ones (your/your son's health), not to mention that several of the questions are not even relevant to the care you/your son can expect to receive.

 

[Jay1]

I wouldn't even remotely consider asking my doctors any questions of that nature! And if by some chance I did come across a new doctor I felt I needed to ask such questions, I'd be finding a new doctor.

As Cint said most doctors do not have the time to address so many questions of this nature in addition to the far more important ones (your/your son's health), not to mention that several of the questions are not even relevant to the care you/your son can expect to receive.

Hi masterjen,

I should have been more specific and said that more than half of these questions are applicable in USA only.

You are in Canada where the health care structure is very different from USA.

Thanks,
Jay

 

[AlohaBird]

Within an HMO structure like I have (Kaiser), the doctor who is in the room with me is not the one who makes the decisions about what drugs are bought from what pharma company. Those decisions are made much farther up the food chain where there may be some wining and dining and kickbacks. I don't know.

HMO doctors also see a certain number of patients a day and get a fixed salary based on hours.

Most doctors did not study much if any nutrition in school but hopefully they have made up for it since. It becomes painfully obvious if they haven't. Toss some terms like "ketosis" and "microbiome" into the conversation and see if they know what you are talking about.

My new primary care doc is great and she even eats paleo as does her whole family. But she volunteered that info. I don't really feel I have the right to pry into a doctor's personal home life, what she feeds her kids or what meds she takes.

 

[zombelina]

Hi Jay- Just wanted to share my thoughts. Developing a trusting relationship with a doctor is very difficult but very important. I do think it's great to ask questions to make sure a doctor is a good fit for you, but I would be wary of crossing the line into seeming accusatory/mistrusting. I think in an initial appointment, you can usually get a feel for whether the doctor is a good fit for you just by listening and talking naturally (as Bernard said). If a doctor takes time to listen to me and my opinions and includes me in decision making that immediately skyrockets them to my favorites. It sounds like this could be the type of relationship that would work for you, too.
Questions I would consider asking depending on the relationship and what is most important to me: 2 (very carefully), 4, 11 and 12. 6 is not really necessary to ask because (I'm pretty sure that) a drug is not approved until there are double blind, placebo controlled, randomized studies. You can also find out yourself with a little research.

This is how I feel about some of the others:
7- this is very personal and doctors will grieve when their patients die. They also may carry that guilt and weight on their shoulders even when it's not their fault. It does not say much about the specific medical care because there are so many other factors involved in rates of SUDEP in a given practice (type of patient, etc.) than quality of care. I'm honestly not even sure if they are allowed to share that information.
8 - I feel like this is the most inappropriate. If you have clients/students/patients of your own, could you imagine them asking you this question? I would be flabbergasted. Doctors have medical problems just like we do and treat them in whatever way is best for them.
9 and 10 - simply not our business, unless they offer up the info. Unless you are for some strange reason having play dates with his/her kids, there isn't a need to know.
Everyone is different and maybe the right doctor for you/your son will be one who responds really well to your questions. But please reconsider which questions are truly necessary. I hope you and your family are doing well.

 

[Blonde Angel]

Each to their own...
They are legalized drug pushers..

If one can find a Dr that can answer questions to the best of their ability .. I have no issue, if they are talking rubbish, I will walk out the door.

 

[valeriedl]

To be completely honest with you I don't care about what my dr would have to say about these things. As long as he treats me good is all that matters! I know a dr doesn't have time to answer all these questions in a vist, I'm sure he'd tell me about them, but I'd rather spend time talking about my epilepsy than asking him what he eats.

(1) How much money you receive every time you see me? On an average, how many times in a year do you see a patient?

I don't really care how much my dr makes, as I said as long as he treats me good that's all that matters. My dr tells me how often he sees a patient. Depending on how often they need to be seen. Some need seen more than others. When I was first diagnosed with epilepsy I was seen more often. Now that my seizures have reduced I see him less often.

(2) Have you ever received any money or kickbacks or any other benefits from pharmaceutical companies whose drugs you prescribe for your patients?

I know that my dr always tries to put me on generic medicines because they are usually cheaper for me. He only puts me on a name brand when a generic isn't available. Even at the pharmacies they don't always put me on the same 'brand' of generic every single time. I don't know if he receives any sort of benefit from putting me on which ever form of the med that he does, especially since the pharmacy will change the 'brand' of the med at times, but he always seems to what he does to help me out, not him.

(3) Have you ever accepted paid flight tickets or boarding and lodging from any pharmaceutical company for any reason?

Why do I care? I know people who work for business, non medical, who will receive these things so that they can learn more about what ever it is that they are selling. They usually hate going! It's not like it's a vacation that they get to go on.

(4) Did you study nutrition in medical school?

My first question would be did you study EPILPEY!

(5) Do you read medical research papers related to nutrition? If yes, how many papers did you read in last one year?

If I wanted to know how many papers medical research he read it would be about epilepsy before it would be nutrition.

(6) Are there any long term double blind randomized studies done on drug interaction of the multiple AEDs that you are asking me to take? If yes, I would like to see them.

My neuro usually tells me these things right up front. If there are any long term effects from taking one drug or a number of them he will try not to keep me on that drug any longer than he needs to.

(7) How many of your patients have died from SUDEP? What happened? Were they taking any drugs? If yes, what drugs were those patients taking?

An SED can happen to anyone, not just someone with epilepsy, it's just something that happens. They have no idea what caused the death, nothing happens, you just die. Dyeing from a TC seizure is not a SED. Yes it can be caused by some meds but it's not like just because you are taking the med means that you could die from it. There are many people who could have taken the same med for many years with no problems. It's not like it runs in the family and can be genetic. I know someone who woke up one morning and found his wife dead next to him, sorry to be so blunt. They have no idea what caused her death but they think she died from a SED.

(8) What kind of pharmaceutical drugs do you take yourself and for what?

I really don't care if he has any type of medical condition or takes any meds for it. As long as he's not using drugs, pharmaceutical or not, for recreational purposes is all that matters.

(9) What kind of food do you eat for breakfast, lunch and dinner?

Honestly why do I care what he eats? If he wants to eat hamburgers and French fries from McDonalds 27/7 that's fine - it's his body. As long as he tells me the things that it's ok for me to and not to eat is what matters to me.

(10) What kind of food do your kids eat for breakfast, lunch and dinner?

I really don't care what he feeds his family. If he wants to give them candy bars for each meal that's fine. I'm not even sure if my neuro has kids. Again as long as he tells me what it's ok for me to eat and not to eat is what matters to me.

(11) Have you seen movie "First Do No Harm"? How do you feel about it?

I've never even seen the movie so why should I expect him to have seen it?

(12) Have you heard of Dr, Freeman and Dr, Perlmutter? What are your thoughts on them?

I don't know who these people are so why should I expect him to?

 

[Jay1]

I am providing the answers to the questions. Sad but these answers are true.

Here are some additional questions that everyone should have the right to ask their neurologist / epileptologist.


(1) How much money you receive every time you see me? On an average, how many times in a year do you see a patient?

Someone makes $1000 every time they see you. Should they fix the root cause of your illness and not see you again? Should they make you feel little better initially but still keep you sick so that you keep coming again and again?

Well, everyone counts the greenbacks in the bank and the doctors are not immune from it. (at least true in health care system of USA). Have you ever seen a poor doctor?


(2) Have you ever received any money or kickbacks or any other benefits from pharmaceutical companies whose drugs you prescribe for your patients?

Accepting money or benefits is called conflict of interest and is unethical. I was reading the annual report of a epileptic drug company and there was a line item of $20 million expenses for educating 1200 neurologists in USA. It comes to $16,000 USD per neurologist.

I am curious as to what education did the drug company provide to the trained neurologists that they spent $16,000 per doctor.


(3) Have you ever accepted paid flight tickets or boarding and lodging from any pharmaceutical company for any reason?

An ethical doctor will not accept it. An unethical doctor will not hesitate to throw you under the bus. Why should the doctor care as long as he gets the greenbacks?


(4) Did you study nutrition in medical school?

They do not teach nutrition in medical or nursing schools. You can verify it with any doctor or by submitting FOIA request.


(5) Do you read medical research papers related to nutrition? If yes, how many papers did you read in last one year?

If the answer is No, then it should generate a red flag as to if the doctor makes efforts to continually update his knowledge about latest medical research.


(6) Are there any long term double blind randomized studies done on drug interaction of the multiple AEDs that you are asking me to take? If yes, I would like to see them.

Unfortunately, no studies have been done on drug interactions of multiple AEDs.

Drug approval process is very different from what all of us imagine it to be.


(7) How many of your patients have died from SUDEP? What happened? Were they taking any drugs? If yes, what drugs were those patients taking?

Well it will give you an idea about the care the doctor has provided. Does he carefully evaluate the effects before putting drugs in your body? If you do not care, then why should the doctor care?


(8) What kind of pharmaceutical drugs do you take yourself and for what?

I have spoken to few doctors and all of them said that they will evaluate very carefully before taking any drugs themselves. However, patients are a different story.

Do you know of any doctor who died in a hospital? Very rare.


(9) What kind of food do you eat for breakfast, lunch and dinner?


I can bet that his food is much more healthier that other people. But he will never tell you to eat healthy as it affects his financial wellbeing.


(10) What kind of food do your kids eat for breakfast, lunch and dinner?

Do you really think that the doctors go to Mcdonald and Taco bell and other fast food restaurants and feed that MSG junk food to their own kids?

Folks, you are the master of your own health.


(11) Have you seen movie "First Do No Harm"? How do you feel about it?

If a person with seizures or epilepsy or their caregivers have not seen this movie, then they are living in a shell.

I told my son's neurologist that I have seen this movie. She said "Oh no. Its not a good movie". Obviously, this is a bad movie because it affects their financial bottom line as you will become knowledgeable and take control of your own health.


(12) Have you heard of Dr. Freeman and Dr. Perlmutter? What are your thoughts on them?

If a neurologist does not know about Dr. Freeman, I will simply run away from them. Dr. Freeman was the head at John Hopkins and was the pioneer of treating people with diet and most of the treated folks have been seizure free.

His thoughts will give you an idea if your body is going to become a chemical laboratory.

 

[valeriedl]

So you're basically saying, according to some of these answers, is that my neuro isn't trying to help me at all? He just does a little but wants to but always makes sure he keeps me having seizures so that he will make money off of me?

 

[Jay1]

So you're basically saying, according to some of these answers, is that my neuro isn't trying to help me at all? He just does a little but wants to but always makes sure he keeps me having seizures so that he will make money off of me?

I am not saying it about any particular neurologist or doctor. Some are awesome doctors and have very high ethical standards too. But then there are scumbags too.


Did you read about the doctor in Michigan who gave chemotherapy treatment to 1,000 folks and received $35 million. The sad part is that most of these 1,000 people never had cancer in the first place.

http://www.cnn.com/2015/07/10/us/michigan-cancer-doctor-sentenced/index.html


Did you read about the hospital in Florida who kept on doing heart surgery on 2-3 month old babies and killing them? The incentive was $500K payment from Medicaid or Medicare.

http://www.cnn.com/2015/06/03/health/heart-surgery-death-st-marys-hospital-florida/index.html

 

[AlohaBird]

Jay,
I really think your time would be better spent looking into things that could actually help you and your family. Working on the positive.
It sounds like you are wasting a lot of time and effort on "baby killing" conspiracy theory websites.

Doctors are human beings and as such they are capable of being all kinds of things including greedy, heroic, ignorant, well informed, selfless, and stupid.

Find a good one for you and your family. Leave the righteous indignation for the late night blog crawlers. It's not worth your time.

 

[Nakamova]

Doctors are human beings and as such they are capable of being all kinds of things including greedy, heroic, ignorant, well informed, selfless, and stupid.

:agree:
I count doctors and nurses among my friends and relatives. None of them are in it for the money. All of them feel hamstrung by aspects of the current (U.S.) medical system that emphasize quantity over quality. I was speaking to a nurse just last night. She says the number one concern of her union is patient safety -- not money -- due to having too few nurses on staff. I know of a doctor who just quit her job. She loves her patients, goes out of her way to find non-pharmacological treatments where it's safe and appropriate to do so. She's burned out by the mountains of paperwork that she had to take home after every workday. Her dream is to be able to work at a free clinic and just do what she loves -- practice medicine and help comfort people.

There are certainly some stinkers in the medical profession. But approaching every doctor with hostility and suspicion isn't worth the energy.

 

[valeriedl]

I don't understand why you seem to think that nutrition alone should be one of your top priorities when it comes to dealing with epilepsy. Everyone in general should have good nutrition no matter what. I've eaten half a peperoni pizza before and it's never caused me to have a seizure.

This website is called Coping With EPILEPSY so if you are going to give us a link for something to read have it be about epilepsy please, not cancer or heart surgery.

 

[Cint]

I have an aunt and several cousins in the medical profession, too. None of them are in it for the $$. They love helping others. Sadly, the one aunt who was my favorite and a wonderful nurse, passed away with cancer 20 years ago. One of my docs in the neurology field passed away several years ago, too. They're human, too, just like the rest of us!

Here is an example of advice we have available here in my part of the world:

 

[Jay1]

:agree:
I count doctors and nurses among my friends and relatives. None of them are in it for the money. All of them feel hamstrung by aspects of the current (U.S.) medical system that emphasize quantity over quality. I was speaking to a nurse just last night. She says the number one concern of her union is patient safety -- not money -- due to having too few nurses on staff. I know of a doctor who just quit her job. She loves her patients, goes out of her way to find non-pharmacological treatments where it's safe and appropriate to do so. She's burned out by the mountains of paperwork that she had to take home after every workday. Her dream is to be able to work at a free clinic and just do what she loves -- practice medicine and help comfort people.

There are certainly some stinkers in the medical profession. But approaching every doctor with hostility and suspicion isn't worth the energy.

I agree that there are many awesome doctors and nurses. I also know couple of them. I agree that some of them are just caged and feel frustrated in US medical system. They have to worry about lawsuits because they exercised their judgment and did not prescribe any medication. Then they have to worry about pressure from hospital executives for revenue growth.

Basically, the goal was to say "It is our individual responsibility to make ourselves knowledgeable and remain healthy. Do proper research and do not accept something blindly as a gospel truth because it is said by the pharmaceutical companies or the doctor is saying. If we do not care about our own health, why will the doctor care. It is not the doctor's job to educate us."

Nursing union - There is an emergency medication Diastat which can be administered by even non-medical professionals. There are no Illinois or Federal laws which prohibits non-medical personnel from administering it. There are good samaritan laws also. I signed a waiver for school allowing any school personnel to give Diastat in case of emergency and if the school nurse is not readily available. There are many teachers whose kids have seizures and know how to give Diastat. But this scumbag nursing union does not have any common sense and has prohibited non-nurses to give Diastat. They can not even think of the possibilities where nurse is in the rest room and can not come out immediately.

Yes, there is a big financial incentive in not providing information and keeping folks sick.

 

[Cint]

I agree that there are many awesome doctors. I also know couple of them. I agree that some of them are just caged and feel frustrated in US medical system. They have to worry about lawsuits because they exercised their judgment and did not prescribe any medication.

That isn't the fault of the dr. That stems from the pharmaceutical industry. They're the ones shoving the products into the doc's office and then the doc's shove them down our throats. Believe me, I do know a bit about that.

Basically, the goal was to say "It is our individual responsibility to make ourselves knowledge and remain healthy. Do proper research and do not accept blindly something as a gospel truth because it is said by the pharmaceutical companies or the doctor is saying. If we do not care about your own health, why will the doctor care. It is not the doctor's job to educate us"

Who's goal? That is your goal? What patient doesn't care about their own health when seeing a dr. in the first place? It is the doc's job to educate us, to tell us what is wrong in the first place. We are paying them to diagnose us. We are paying for their education.
What about your quote earlier about some movie, that Hippocratic oath: "First do no Harm"?

 

[Cint]

Nursing union - There is an emergency medication Diastat which can be administered by even non-medical professionals. There is no Illinois or Federal law which prohibits from non-medical personnel from administering it. There are good samaritan laws also. I signed a waiver for school allowing any school personnel to give Diastat in case of emergency and the school nurse is not readily available. There are many teachers whose kids have seizure and know how to give Diastat. But this scumbag nursing union does not have any common sense and has prohibited non-nurses to give Diastat. They can not even think of the possibilities where nurse is in the rest room and can not come out immediately.

Yes, there is a big financial incentive in not providing information and keeping folks sick.

So now you're accusing school nurses of keeping your son sick? I find that outrageous! How many nurses are available per students in that school? How well are the nurses educated about E? Not every medical personnel knows much about epilepsy. I once had a CP at my endocrinologist's office and his nurse witnessed it, but she had NO idea what to do. She raced to get my dr. into the room.
So, yes, here, you the patient (your child), needs to educate the school nurse on your son.

 

[Jay1]

So now you're accusing school nurses of keeping your son sick? I find that outrageous! How many nurses are available per students in that school? How well are the nurses educated about E? Not every medical personnel knows much about epilepsy. I once had a CP at my endocrinologist's office and his nurse witnessed it, but she had NO idea what to do. She raced to get my dr. into the room.
So, yes, here, you the patient (your child), needs to educate the school nurse on your son.

I have fought a big battle on this issue with nursing union and explained to them the importance of immediate administration of emergency medication. Everything falls on deaf ears. Do you think anyone cares what happens to kids?

This is a common issue faced by parents of school going kids who suffer from seizures.