[Hopeless]

I know the answer to the question posed. They are HUMAN. That is what is wrong with them. As much as we would like to think they are ALL knowing, they are not.

They are not all of the same caliber, they did not ALL finish at the top of their class, they did not all specialize, etc.

Just imagine all the things they are suppose to know. It is mind boggling to say the least. No one could possibly know everything about all the complexities of the human body and that is why there are so many specialties. But once they specialize, they don't keep up on the things outside of their specialty. (Some don't keep up on things IN their specialty.) Some specialties are very broad while others span a much smaller area of expertise.

It is no wonder we as patients get so frustrated with doctors at times. We expect them to have all the answers and many times we do not get them.

Add to the mix the fact that we as patients don't speak the same language as doctors. What WE say to them may mean something entirely different than what we are trying to convey and vice versa.

Before the days of such access to information that we have available now, especially on the internet and through forums such as this one, we had no way of knowing anything and just accepted whatever a doctor said more or less. Now we have access to information and that can be good and bad.

On one hand, we are at a distinct advantage over our docs, as we not only are LIVING with and FEELING our conditions, but we also have the capability of doing extensive research on it. Ever feel like you know more about your disease than your doctor? Maybe you actually do because all your focus is on that ONE condition where your doctor has to spread his mind over many topics and usually does not have the same amount of time available to him as some of us do.

On the other hand, they are still the ones that spent many years studying and perfecting their skills to the best of their ability and they should know a lot more than we do. Sometimes they just don't take the time to tell us what all is going on in their mind and we think they don't know what they are doing or they are not listening to us. In some cases, we are correct to make those assumptions.

Even though this may sound like "A DEFENSE of DOCTORS", it is just to provoke some thought and understanding on our part before we kick them to the curb unjustly. Some need to be kicked to the curb and we need to take our bodies and health concerns elsewhere but sometimes we are just frustrated and understandably so.

Just think for a minute how many drugs are on the market that they need to know about and in depth, the number of laboratory tests, the number of diseases, the over lapping symptoms of various diseases, the interactions of various body functions, and the list goes on and on.

So what has prompted me to write this post? I am very frustrated that a number of doctors have not been able to alleviate one of my symptoms nor give me an explanation or cause of it. So finally I began doing some of my own research and found that it is a lot more difficult than I had thought. I don't understand a lot of what I read. Most of my prior research has always been to learn more about a condition or disease for which I have already been given a diagnosis. This is a first for me,...... to try to "self" diagnose. Not a territory that I want to rely upon but thought I would give it a try just out of my frustration.

In conclusion, there are some good docs and some not so good. We have to ferret them out for ourselves. Just because a doc does not always have the answer does not necessarily make him a bad doc. Maybe he is just a human.

[mrsD]

Your frustrations are very real, and sadly common, today.

I think with my 40+yrs experience, I do think the main problem is that doctors refuse to continue to educate themselves.
They have been pandered to by drug companies for so long, have been given bribes and gifts for so long, they sit back and expect the world to come to them. Once a drug goes off patent, they do not look for new information on their own when the drug salespeople move on. So in effect they do not have much therapeutic useful information to guide them when seeing patients.

They don't really reach out to the world to find answers anymore.

They are angry too, with insurance companies, and high liability rates, and as long as they continue to bury their heads in the sand, those rates will go up and not down.

I have to say... how can anyone trust a doctor who after 20 yrs of NSAID availability, will call ME up to explain what an NSAID is or how it works?

How can a doctor today continue to prescribe D2 instead of D3 for his patients after doing the testing showing low D.

How can a doctor ignore the B12 data out there and never even test patients with neuro symptoms for low B12. How many of them do not even know what MTHFR stands for, when up to 30% of people in the US now may have this mutation?

One has to wonder and you are not alone with these questions, today, hopeless!

[juliejayne]

I have to say that I agree with much of what Hopeless says. But MrsD hits the nail on the head "doctors refuse to continue to educate themselves".

And furthermore, they are still expecting us patients to accept everything that they offer us as if it was holy scripture.

When an educated patient asks intelligent questions, I do not expect them to have all the answers at their fingertips. I do however expect them to go away, do the same research that I can do, and more because they understand more of what they read. And I expect them to come to the follow up appointment well versed and with intelligent diagnosis. Sadly that is not what I have received.

[Hockey]

Sadly, I don't think the arrogance is anything new. I do, however, feel that doctors, on the whole, have grown less compassionate.

A physician friend, forced to retire by a serious, complicated illness, concurs. Her condition brings her into contact with many doctors. She understands that, to maintain their sanity, healthcare workers need a professional detachment that prevents them from taking all their patients' problems home. What concerns her, is that many don't seem to give a fig about their patients, even while they're interacting with them. She wonders what in heck they're teaching them in med school these days.

My own experience with doctors has been so negative that I would term it traumatic. So much of their hostility was generated by their frustration at their inability to "fix" me. "OMG, how dare you show me I'm not God. It must be your fault." Hmmm.... if they want frustrating, they should try living with my disabilities.

My pets get better, more compassionate care from our vet. I wish I could buy a Saint Bernard costume and go see him.

[mrsD]

Yes, Hockey... your last statement is really accurate.

2 yrs ago our cat Oreo had a rare cancer ...and I discovered two things. Either the Vets I went to (4 in all) were ready to hit us with thousands of dollars of treatments (it was over $1000 for just the ultrasound and biopsy), or like the 4th one I desperately went to after the diagnosis but before the $5000 surgery... He was fantastic. Very compassionate, available for telephone questions ( I had twice)...and he kept Oreo in a remission with prednisolone for a year and in that time she enjoyed going outside and doing her usual cat routines -- his prognosis was only 2 months and she surprised both of us. In the end she did have to be put to sleep but he did that very gently too. (I asked him the big question that first appointment-- "would YOU do this surgery if it were your cat?" and he told me "no".)
So we decided to use his clinic from then on and it has just been fantastic.

I have found myself thinking as you do Hockey, that I wish more human doctors could be like he is!

[glenntaj]

--may well be one of the most important here in a long time, and it should be read by a lot more than the denizens of Neurotalk. (I'm going to see what I can do about that, if everyone's okay with it--don't think there's anything particularly egregiously identifying here, except may be for me, and I'm extremely public with my conditions for advocacy reasons.)

In a few posts, the major problems with patient/physician interaction in the US today have been delineated, with many sides represented. And as we can see, both physicians and patients have contributions to make to improving the situation.

Many here at Neurotalk are familiar with my quest to get my neuropathy diagnosed some eleven years ago and how multiple doctors were clueless until my own research led me to a world-renown research and practice center (which fortunately I lived within reach of). While it was hard to get an appointment there, when I finally did the doctors and other staff were not only knowledgeable, but they listened to my suspicions and were quite willing to test them (and, of course, they did have access to state of the art practice, which is how I got my skin biopsy). Moreover, I got the most thorough general physical examination I have ever received that day.

Now, part of this may well be that I was immediately considered an interesting case. And part of it was that the doctors there, for some reason, did not seem to have a big ego thing going on which required them to believe the obviously intelligent patient before them couldn't possibly know what he was talking about. But I suspect that a big part of it was that this was taking place at a tertiary center, very well-funded, at which time could be taken with patients and the practice wasn't about shoving twelve patients through each hour, because financially it didn't need to be.

This also happened eleven years ago now, when pressures were a little less. I am led to understand that at the same place now, while the service is still good, there do seem to be reports of shorter shrift; there seem to be more financial and population pressures there than previously. (My initial visit there was two hours and then I had a skin biopsy later that afternoon; that doesn't seem to be happening with initial visits there anymore as much. More's the pity.)

But, I'll end this with my somewhat usual rant. These problems will go on unless we, as patients and health professionals, and especially as voters, take action to stop it. The health care system we have set up here is not an inevitability--it's much more a historical accident of insurance companies getting ties in with employers in World War II--and we do not have to keep a system that looks to profit first, second and third, no matter how entrenched those interests are. Plenty of other nations have systems that work better and get better outcomes for much less cost and which allow much more personal attention, and while that may involve some hard decisions about how we're going to distribute and ration resources, we're already allowing such decisions to be made by profit making entities, and hardly fairly. I'd be quite willing to let other entities (citizen councils, government advisory boards) take a crack at devising a system under which health professionals can promote health rather than the bottom line. (And if that's "socialist", so be it.)

[Kitt]

My experience is that the GP has never seen another case of CMT. And it is not likely that they will. And they do not have time to research it. They have had like 10 minutes concerning it in their training. (Seeing someone else with CMT would especially be true in a small community.)

However, in saying that, they possibly already have seen someone or two with CMT and it was misdiagnosed as something else. And to complicate matters, there are over 70 types of CMT identified so far and the number is growing. But, even the most common types are still being misdiagnosed. And all this even though CMT is the most common "inherited" neuromuscular syndrome.

A good neurologist who knows CMT is another matter. However, they are not available in a small community either.

[waves]

Hopeless,

You sound like you do have some hope... I hope that is the case. I also hope you find some answers and some relief.

Just because a doc does not always have the answer does not necessarily make him a bad doc. Maybe he is just a human.

The converse is also true:-

Just because a doc sounds like he has the answer does not necessarily make him a good doc.

That may sound weird. But I've had a couple docs really inspire confidence in me... they listened, they talked, and what they said made sense (at the time). Surgery was suggested, and I could have accepted. Subsequent thought revealed incongruities.... that would also have turned up if I had been operated unsuccessfully... except after surgery my prognosis would have been worse. Not so good.

Going back to the doc that does not have the answers... I appreciate these perhaps the most. More often than we'd like, a medical case has no single, clear answer. Copious tests might be run and turn out negative, while symptoms persist or worsen. A doctor who affirms not to know, and is willing to keep looking is IMHO a good doctor. I'd say he need not be medically brilliant, but so far, the only ones I've ruun into who had that spirit of persistence were well above average.

Originally Posted by Hopeless

In conclusion, there are some good docs and some not so good. We have to ferret them out for ourselves.

Yes. It takes a lot of patience. With some things I have given up. Our (my non-US) health system does not really allow too much hopping. In the US you have similar constraints placed by insurance co's.

I wish you well.

waves

[waves]

Originally Posted by glenntaj

I'd be quite willing to let other entities (citizen councils, government advisory boards) take a crack at devising a system under which health professionals can promote health rather than the bottom line. (And if that's "socialist", so be it.)

Yeah... emm, just a parethesis, on this, Glenn.

Watch you don't romanticize that socialist/socialized thing too much... not interested in the political here, but just the practical side. It's just not all it's cracked up to be. Oh sure, perhaps some countries implement it well, but you could then argue that the US system could be implemented better without changing the basic constructs.

I live in a country with socialized health care. We have a lot of the same "bottom line" issues present in the US because the State basically puts up the same stops that insurance companies do in the US. The State gets our taxes and puts what it decides should go into health care... and don't you dare spend a cent more than "it" thinks you should. Second opinion? Ok, but must wait a year before the state willl pay for a third, no concept of "override" for brand meds where generics fail, no option for sedation for diagnostic procedures... bla bla bla. A lot of times, thosee who can end up seeing doctors privately (out of pocket).

As to the issues Hopeless presents, I see the same things in doctors here as well. It doesn't all seem to be money-driven, although, according to one doctor I know here, many of the doctors in the system are underpaid. But some just seem terribly bored. I've seen filing clerks with more enthusiasm than many doctors. Others seem to be on serious power trips and I mean seerrrrious, kiss-my-feet-thou-lowly-serf type trips.

waves

[Hopeless]

Thanks to each of your that have posted a response to the thread.

Most everyone here has experienced frustrations with their doctor(s) and I think a part of that stems from the mere fact that a lot of our conditions are neurological and that seems to be one of the most baffling and least understood specialties around. It is also a specialty that has a vast area of needed expertise. It encompasses the ENTIRE nervous system, from the brain, spinal cord, and peripheral areas. There is also over lapping areas with other specialties, such as orthopedics, just to mention one.

Don't misunderstand, I am NOT saying doctor frustration is limited to neurology physicians. It can happen in primary care and ANY specialty. I just think it is more abundant in the neuro field

A cardiologist is usually just dealing with ONE organ, the heart. A nephrologist, again, just one organ, the kidneys. An ophthalmologist, just the eyes. A podiatrist, just the feet. An, ENT, just the ears, nose, and throat. Yes, sometimes it is more than one organ and involves an entire system. like the entire circulatory system, but in my opinion, the field of neurology is one of the most complex systems in our bodies. Many conditions in the neuro field is not cut and dry and easily diagnosed. Many times there is no specific test that can prove and identify a specific condition.

I have been a frustrated patient on many occasions. I have also been a very grateful patient on a few occasions, too.

I have a doctor that literally saved my life many years ago. I still see him regularly.
I had another doctor that was GREAT for a specific condition but awful for another illness.
I have had doctors that failed to diagnose problems when they were in the early stages and SHOULD have been caught. I have had doctors that mis-diagnosed me. I have had botched surgeries. I have declined recommended surgeries (and later discovered that I was wise to have declined). I have been given medications that I have refused to take and have issues with doctor's just throwing "pills" at a situation just to appease themselves that they are "doing" something. I don't accept the pat on the head with the kick in the butt. I am not one to "self" diagnose but I require full explanations of how my doctor(s) have reached their conclusions about a diagnosis they have handed me. I also do my homework and research the topic and get second opinions when prudent to do so.

In conclusion, I think we as patients need to play detective not only with our illnesses but also with our physicians. We need to question them and decide for ourselves if we are getting the best diagnosis and care. Sometimes we know our bodies better than any doctor. Sometimes the doctor knows it better and we are in denial. Some conditions are silent and only our doctor can tell us about them. If your body is telling you something different than what you doctor is telling you, you must be a detective and find a reason for the discrepancy. Sometimes we just need to find another doctor.