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Doctor Shopping versus Finding a Physician
Doctor Shopping versus Finding a Physician
One of our most frequent pieces of advice on the forum is to find a different doctor - usually a different neurologist, but it might be any kind of doctor. This brings up the taboo subject of Doctor Shopping. Within the medical profession the patient that “doctor shops” is dreaded and looked down upon. Why is this patient so bad? I’ve had these discussions. A doctor will likely tell you that they are doing one of a few things that they suspect about the patient. They might be that dreaded patient who is healthy, but convinced his symptoms indicate a serious disease. Or, they might be looking for a doctor to given them the specific diagnosis they are looking for. Another fear is that they want to sue a previous doctor and they come to get another opinion to “nail” the previous doctor. Some doctors believe that patients move from doctor to doctor to seek drugs for an addiction. And some, just don’t like to deal with complicated patients who have a lot of medical records.
But, during that discussion few doctors will point out that a patient might be seeking a true physician, someone with whom they can have a trusted relationship, who won’t dump them when the answers are tough to find, or who won’t turn and blame them when the answers aren’t readily forth-coming. I suppose that is human nature.
I cannot think of another profession that has such a taboo against a client changing a provider. No one is surprised or even questions that we change mechanics, a dry cleaner, the person who cuts our hair, who gives us a massage, or who does our taxes. We are free from guilt (except from loyalty) when we move around to see if someone else fits us better. We are the consumers. And we need a very special skill set from and relationship with our physician.
The person with multiple serious complaints should be no different. Within the context of a person who might be suffering from Multiple Sclerosis, we all need a doctor who is dedicated and a complete physician. We need them to believe us, to be invested in helping us and in finding the cause of our complaints. I was taught from Day One in training to “First, Believe the patient.” And to continue to believe them until they gave us a reason not to.
When a person realizes they have earned passage into Neurological Limboland, they begin looking around and asking why. Why is the answer evading their doctors? Many times they see that the doctor is striving hard for answers and that the answers are not coming. They trust the physician. But, they also begin to look elsewhere for answers. Our symptoms often destroy the quality of our lives, they may have disabled us and threatened our jobs or professions. Our families and our relationships suffer badly. Our self-esteem may take the hardest hit.
Should we always move on when our doctor is stumped? Absolutely NO. When we have a good relationship, and the doctor is merely stumped, there is always the second opinion.
There is the Internet - the dreaded internet where a patient can diagnose themself with all manner of horrible diseases and where misinformation abounds. Many doctors will close up and turn off when they hear that the patient “learned” something online. But, there is also good and solid info to be had online.
If a patient learns that their doctor is undereducated on something that they suspect, like MS, what do they do? A few will have luck taking good info back to their doctors and moving forward. I’m afraid that is a minority and I have never heard of it happening with a neurologist, though we have seen it with primary care doctors.
Is a doctor that poorly knowledgeable about MS and isn’t open to learning a reason to leave. My opinion is that Yes, oftentimes it is. Too often the particular misinformation the doctor has about MS will completely prevent the diagnosis from ever being made. At that point, the person has to make the decision to stay - and never make progress - or to move along.
The most important reason for moving from a doctor is the way a person is treated by that doctor.
The problems can be any number of things, but all of them have to do with a failure on the doctor’s part to believe in the patient and to be invested in finding the cause.
When the doctor is arrogant and belittles the patient it is time to move on.
If the doctor jumps to the conclusion that stress is the reason behind symptoms and the patient does not feel this could be the case, it can be a difficult situation. The patient is then burdened with proving in some way that stress/anxiety/depression is not the cause. We have seen that sometimes a heart to heart talk will turn this around. That is a doctor to give a second chance.
But, if the doc insists that the cause is psychiatric it is time to move on. Sometimes we can ask for a psychiatric consult with the hope that this will “clear our name”. Most of the time on the forum this is the outcome. Only once have we had the psychiatrist conclude that the basis for the neurologic difficulty is stress or anxiety-related. Another thing that can be very useful is to request a neuropsychological evaluation. This also can show that the problems are organic and not related or caused by depression or anxiety.
When the doctor makes no sense from one visit to another it is often time to move on.
When the doctor has made statements that the patient later finds are untrue and won’t correct the record it is time to move on.
If the doctor lies in the medical record about what the patient has said or if they claim to have done an exam they haven’t, it is time to move on.
People know when someone is dismissive of them, even if they don’t understand the medicine involved. If a doctor is not listening to you or believing you - yes, it is time to move on.
We need to be clear why we are moving along. If it is to get a diagnosis of MS - that is the wrong reason. Some of us know deep down that MS is our answer. I can only say, that we have all been surprised at some of the different diagnoses our members have received. In my opinion, we move along until we find a doctor that truly LISTENS to us, that really LOOKS at us and does a careful and complete neuro exam, who THINKS about the implications of what he has heard and seen, and who does a thoughtful work up. And then we need a doctor who ACTS on what he has learned. We need the answer, not a specific answer. Though sitting on the fence and seeing what happens next can be useful, it is often the sign of a doctor who is not confident in what he sees and thinks.
Doctor Shopping? Yes, but it is to find a physician who will do what they were trained to do. So many of us have “moved along” and finally found that one who will look for and then put all the pieces together. We are evidence that these doctors ARE out there to be found.
I would like to discuss how we can minimize the impact that this search for a compatible doctor has on the next doctor we see. I wonder if a cover letter to the doctor explaining that they have felt dismissed by prior doctors and never listened to would be helpful - without naming names or pointing fingers or going into detail.
Any thoughts on all of this?
Quix
One of our most frequent pieces of advice on the forum is to find a different doctor - usually a different neurologist, but it might be any kind of doctor. This brings up the taboo subject of Doctor Shopping. Within the medical profession the patient that “doctor shops” is dreaded and looked down upon. Why is this patient so bad? I’ve had these discussions. A doctor will likely tell you that they are doing one of a few things that they suspect about the patient. They might be that dreaded patient who is healthy, but convinced his symptoms indicate a serious disease. Or, they might be looking for a doctor to given them the specific diagnosis they are looking for. Another fear is that they want to sue a previous doctor and they come to get another opinion to “nail” the previous doctor. Some doctors believe that patients move from doctor to doctor to seek drugs for an addiction. And some, just don’t like to deal with complicated patients who have a lot of medical records.
But, during that discussion few doctors will point out that a patient might be seeking a true physician, someone with whom they can have a trusted relationship, who won’t dump them when the answers are tough to find, or who won’t turn and blame them when the answers aren’t readily forth-coming. I suppose that is human nature.
I cannot think of another profession that has such a taboo against a client changing a provider. No one is surprised or even questions that we change mechanics, a dry cleaner, the person who cuts our hair, who gives us a massage, or who does our taxes. We are free from guilt (except from loyalty) when we move around to see if someone else fits us better. We are the consumers. And we need a very special skill set from and relationship with our physician.
The person with multiple serious complaints should be no different. Within the context of a person who might be suffering from Multiple Sclerosis, we all need a doctor who is dedicated and a complete physician. We need them to believe us, to be invested in helping us and in finding the cause of our complaints. I was taught from Day One in training to “First, Believe the patient.” And to continue to believe them until they gave us a reason not to.
When a person realizes they have earned passage into Neurological Limboland, they begin looking around and asking why. Why is the answer evading their doctors? Many times they see that the doctor is striving hard for answers and that the answers are not coming. They trust the physician. But, they also begin to look elsewhere for answers. Our symptoms often destroy the quality of our lives, they may have disabled us and threatened our jobs or professions. Our families and our relationships suffer badly. Our self-esteem may take the hardest hit.
Should we always move on when our doctor is stumped? Absolutely NO. When we have a good relationship, and the doctor is merely stumped, there is always the second opinion.
There is the Internet - the dreaded internet where a patient can diagnose themself with all manner of horrible diseases and where misinformation abounds. Many doctors will close up and turn off when they hear that the patient “learned” something online. But, there is also good and solid info to be had online.
If a patient learns that their doctor is undereducated on something that they suspect, like MS, what do they do? A few will have luck taking good info back to their doctors and moving forward. I’m afraid that is a minority and I have never heard of it happening with a neurologist, though we have seen it with primary care doctors.
Is a doctor that poorly knowledgeable about MS and isn’t open to learning a reason to leave. My opinion is that Yes, oftentimes it is. Too often the particular misinformation the doctor has about MS will completely prevent the diagnosis from ever being made. At that point, the person has to make the decision to stay - and never make progress - or to move along.
The most important reason for moving from a doctor is the way a person is treated by that doctor.
The problems can be any number of things, but all of them have to do with a failure on the doctor’s part to believe in the patient and to be invested in finding the cause.
When the doctor is arrogant and belittles the patient it is time to move on.
If the doctor jumps to the conclusion that stress is the reason behind symptoms and the patient does not feel this could be the case, it can be a difficult situation. The patient is then burdened with proving in some way that stress/anxiety/depression is not the cause. We have seen that sometimes a heart to heart talk will turn this around. That is a doctor to give a second chance.
But, if the doc insists that the cause is psychiatric it is time to move on. Sometimes we can ask for a psychiatric consult with the hope that this will “clear our name”. Most of the time on the forum this is the outcome. Only once have we had the psychiatrist conclude that the basis for the neurologic difficulty is stress or anxiety-related. Another thing that can be very useful is to request a neuropsychological evaluation. This also can show that the problems are organic and not related or caused by depression or anxiety.
When the doctor makes no sense from one visit to another it is often time to move on.
When the doctor has made statements that the patient later finds are untrue and won’t correct the record it is time to move on.
If the doctor lies in the medical record about what the patient has said or if they claim to have done an exam they haven’t, it is time to move on.
People know when someone is dismissive of them, even if they don’t understand the medicine involved. If a doctor is not listening to you or believing you - yes, it is time to move on.
We need to be clear why we are moving along. If it is to get a diagnosis of MS - that is the wrong reason. Some of us know deep down that MS is our answer. I can only say, that we have all been surprised at some of the different diagnoses our members have received. In my opinion, we move along until we find a doctor that truly LISTENS to us, that really LOOKS at us and does a careful and complete neuro exam, who THINKS about the implications of what he has heard and seen, and who does a thoughtful work up. And then we need a doctor who ACTS on what he has learned. We need the answer, not a specific answer. Though sitting on the fence and seeing what happens next can be useful, it is often the sign of a doctor who is not confident in what he sees and thinks.
Doctor Shopping? Yes, but it is to find a physician who will do what they were trained to do. So many of us have “moved along” and finally found that one who will look for and then put all the pieces together. We are evidence that these doctors ARE out there to be found.
I would like to discuss how we can minimize the impact that this search for a compatible doctor has on the next doctor we see. I wonder if a cover letter to the doctor explaining that they have felt dismissed by prior doctors and never listened to would be helpful - without naming names or pointing fingers or going into detail.
Any thoughts on all of this?
Quix
In 1986, I went to family doc with no posturing experience happening at that time.
I had no knowledge of ms No clue. I had to tell him(what what was happening to me (my leg and hand curling in at same time) Ithought he would laugh.
He didn't. After the brain mri, he told me to fine the best ms neuro i could find I was in total denial. Luckly, I worked as a bookeeper in the med profession.I also kept documents of all the goofy symptions that I had over the years. Combined with the mri, tap ,and clinical findings I was diagnosed quiickly, It is so important to let your doc get to Know you and to be honest. Linda
I had no knowledge of ms No clue. I had to tell him(what what was happening to me (my leg and hand curling in at same time) Ithought he would laugh.
He didn't. After the brain mri, he told me to fine the best ms neuro i could find I was in total denial. Luckly, I worked as a bookeeper in the med profession.I also kept documents of all the goofy symptions that I had over the years. Combined with the mri, tap ,and clinical findings I was diagnosed quiickly, It is so important to let your doc get to Know you and to be honest. Linda
dear quix,
this is a very interesting topic to bring up as i have seen over 20 doctors since whatever it is that plagues me took hold of my life last january.
after a lot of sighing, my first primary care doctor prescribed me valium on our last visit. he sent me away after reluctantly giving me the name of a neurologist saying, "i do not believe there is anything neurological going on with you, but we'll see what [the neuro] has to say about this."
i then switched to a woman primary care since i thought she'd be more compassionate and open minded--WRONG. during my last appointment when the burning between my shoulder blades was becoming unbearable, my legs were weakening, and my fatigue was keeping me from performing my daily functions. she rolled her eyes at me and said, "with clear MRIs, there is about a zero chance you MS." she then patted me on the shoulder and told me a little prozac was just the thing to give me a little pick-me-up and help me with my fatigue.
in february, i found my third primary care doctor who is indescribably wonderful and a breath of fresh air. when i went to see her for the first time, she said, "i want you to tell me exactly how i can be most helpful to you in this situation." i told her i just needed her to believe me and she said she absolutely did. she commended me on being able to keep it all together in spite of all that i have been dealing with and there was no mention of anti-depressants. i was blown away. i thanked her profusely and somehow managed to hold back my tears of joy.
my first neuro sent me for physical therapy for 5 months then a sleep study when things started getting worse for me in september. when he did my LP in december per my rheumatologist's request to check for vasculitic inflammation, he told me i didn't need an MS panel run on the fluid since the possibility of MS was not even on his radar. (my LP was negative for vasculitis.) six weeks later, he called to tell me about the inflammation that showed up on my most recent c-spine MRI and that i probably have MS. he then sent me for the IV steroid infusion and was supposed to come to the infusion center to do another LP, but he never showed up. when i called him about my poor reaction to the steroids, he simply said, "hmmm. that's not the reaction we would expect", and told me to come in for another LP in 2 weeks. i decided it was time to find someone else.
my 2nd neurologist spent two hours with me and has been more proactive in the 2.5 weeks since our first appointment than my 1st neuro was in an entire year. he is a practitioner at a local university medical center and i finally feel like i am in good hands. on friday, i finally had a thoracic spine MRI for the first time, along with another c-spine MRI with contrast. we'll see what that reveals next week i imagine.
all the other docs were neurosurgeons to address my cervical spondylosis, an endocrinologist, two rheumatologists (one is a keeper), a stroke neurologist, three urgent care doctors, two neuro-ophthalmologists and a couple of others whose purpose i just can't recall at this moment.
all in all, i haven't been shopping for a doctor who will diagnose me with MS--i just wanted to find providers who were going to stop pegging me as a perimenopausal female who couldn't manage the stress in her life and try to help me figure out what the heck it is that has taken my life away from me.
i have used this metaphor before, but after kissing many frogs, i have finally found the right physicians and for that i am incredibly thankful. do i have MS? maybe. maybe not. but i know these folks are going to help me find out for sure.
peace,
binx
this is a very interesting topic to bring up as i have seen over 20 doctors since whatever it is that plagues me took hold of my life last january.
after a lot of sighing, my first primary care doctor prescribed me valium on our last visit. he sent me away after reluctantly giving me the name of a neurologist saying, "i do not believe there is anything neurological going on with you, but we'll see what [the neuro] has to say about this."
i then switched to a woman primary care since i thought she'd be more compassionate and open minded--WRONG. during my last appointment when the burning between my shoulder blades was becoming unbearable, my legs were weakening, and my fatigue was keeping me from performing my daily functions. she rolled her eyes at me and said, "with clear MRIs, there is about a zero chance you MS." she then patted me on the shoulder and told me a little prozac was just the thing to give me a little pick-me-up and help me with my fatigue.
in february, i found my third primary care doctor who is indescribably wonderful and a breath of fresh air. when i went to see her for the first time, she said, "i want you to tell me exactly how i can be most helpful to you in this situation." i told her i just needed her to believe me and she said she absolutely did. she commended me on being able to keep it all together in spite of all that i have been dealing with and there was no mention of anti-depressants. i was blown away. i thanked her profusely and somehow managed to hold back my tears of joy.
my first neuro sent me for physical therapy for 5 months then a sleep study when things started getting worse for me in september. when he did my LP in december per my rheumatologist's request to check for vasculitic inflammation, he told me i didn't need an MS panel run on the fluid since the possibility of MS was not even on his radar. (my LP was negative for vasculitis.) six weeks later, he called to tell me about the inflammation that showed up on my most recent c-spine MRI and that i probably have MS. he then sent me for the IV steroid infusion and was supposed to come to the infusion center to do another LP, but he never showed up. when i called him about my poor reaction to the steroids, he simply said, "hmmm. that's not the reaction we would expect", and told me to come in for another LP in 2 weeks. i decided it was time to find someone else.
my 2nd neurologist spent two hours with me and has been more proactive in the 2.5 weeks since our first appointment than my 1st neuro was in an entire year. he is a practitioner at a local university medical center and i finally feel like i am in good hands. on friday, i finally had a thoracic spine MRI for the first time, along with another c-spine MRI with contrast. we'll see what that reveals next week i imagine.
all the other docs were neurosurgeons to address my cervical spondylosis, an endocrinologist, two rheumatologists (one is a keeper), a stroke neurologist, three urgent care doctors, two neuro-ophthalmologists and a couple of others whose purpose i just can't recall at this moment.
all in all, i haven't been shopping for a doctor who will diagnose me with MS--i just wanted to find providers who were going to stop pegging me as a perimenopausal female who couldn't manage the stress in her life and try to help me figure out what the heck it is that has taken my life away from me.
i have used this metaphor before, but after kissing many frogs, i have finally found the right physicians and for that i am incredibly thankful. do i have MS? maybe. maybe not. but i know these folks are going to help me find out for sure.
peace,
binx
It's funny (not really), but a lot of the female physicians are as mean-spirited and cold as the men. You would think they would have an innate sympathy, but not always. Frankly, I'm more comfortable with male doctors.
I would like comment on this thread as to whether it belongs in the Health Pages.
Quix
I would like comment on this thread as to whether it belongs in the Health Pages.
Quix
My two cents worth is that this topic belongs in the Health Pages. You have succinctly summarized many people's thoughts and fears about leaving a doctor and "how it will look".
Many are afraid of offending the physician but as you noted have no issue with finding a new dry cleaner or mechanic. You have pointed out the instances where such action is necessary.
Ren
Many are afraid of offending the physician but as you noted have no issue with finding a new dry cleaner or mechanic. You have pointed out the instances where such action is necessary.
Ren
I got lucky and got a wonderful neuro first time out. He's the one who performed the LEEP/EMG and informed me I had a spinal cord injury. He said "this is all very real, and your don't see me referring you to a psychiatrist". I want to eventually see an MS specialist, more for resources than anything, and my neuro is all for it (You mentioned that was a sign of his confidence) .
I expressed to my neuro my concerns he was getting ready to retire (he's 76), and said "not anytime soon..."
My PCP was skeptical when I first described my leg spasms, and started writing me a Rx for RLS, and I stopped her and she LISTENED, and then she wrote a request for the LEEP/EMG. She knows and loves my neuro, and trusts his diagnosis.
Dang - I guess I got lucky....
Guitar_grrrl
I expressed to my neuro my concerns he was getting ready to retire (he's 76), and said "not anytime soon..."
My PCP was skeptical when I first described my leg spasms, and started writing me a Rx for RLS, and I stopped her and she LISTENED, and then she wrote a request for the LEEP/EMG. She knows and loves my neuro, and trusts his diagnosis.
Dang - I guess I got lucky....
Guitar_grrrl
I actually think your experience is far more common. We tend to see the people here who have had a hard time either with the MS or with the doctors, so I suspect that our population is a little skewed. I would really like to believe that the majority of doctors out there are good and kind and trustworthy and honorable and smart.
Yes, the confident doctor will not be offended nor threatened by the request for a second opinion. And in matters as serious as MS, a second look is always a good idea.
I like to have you tell your story.
Quix
Yes, the confident doctor will not be offended nor threatened by the request for a second opinion. And in matters as serious as MS, a second look is always a good idea.
I like to have you tell your story.
Quix
I am very happy to see this posted. I have been bounced around and up and down with my situation.
I had a dx and now maybe do not have a dx. Who knows.
I was starting to wonder if I was doctor shopping. Which I know is not the case but one a doctor throws out that psychological point of view it does mess with your mind even when you KNOW it is wrong.
LA
I had a dx and now maybe do not have a dx. Who knows.
I was starting to wonder if I was doctor shopping. Which I know is not the case but one a doctor throws out that psychological point of view it does mess with your mind even when you KNOW it is wrong.
LA
I totally agree that women doctors are NOT necessarily better than men in the "believing" department. It all depends on the individual. My two WORST doctors were female (internists).
After MANY years, I found a real PCP, the "listen-believe-look-think" type. He's a male doctor and a young one who doesn't think he can tell what is and isn't wrong before the patient has got two words out of her mouth. Also he's family practice--I think they are better than hoity-toity internists.
Quix, your reasons for why to leave (or not leave) a doctor are great. As for minimizing the impact, before I saw my second-opinion neurologist (not counting Dr. R, who didn't give me anything that I'd consider an opinion), I wrote her a letter explaining that I did NOT have "medical student's disease" (as the previous neuro said) and that I would like her to look at me with fresh eyes and no prejudice; if she couldn't do that, would she please let me know before I came in so I could cancel and not waste her or my time.
I don't think she actually read the letter til the day of my visit, but no matter; although she didn't do extensive testing or follow-up, nor discuss things extensively with me, at least she gave no hint of thinking I was a psych case, and her reports were written very accurately. Maybe my pre-visit letter made no difference, but maybe it did.
I think we should be clear at the outset that we do NOT want to hear a "psych" diagnosis unless the doctor can make a fully clear, logical case for it, taking into account the patient's history, symptoms, and test results. You don't know? can't diagnose? aren't sure? OK, fine. Just don't BURDEN us with all those stupid, usually unfounded labels. We should state from the beginning that we won't accept such labels, and why.
Doctors don't want to "burden" patients with a diagnosis of a serious disease such as MS; why do they think it's OK to casually place upon them a heavy, sometimes devastating and harmful, burden of a "psych" diagnosis? Do they have ANY idea how BAD this is for the patient?? Do they think we're so STUPID that we can't handle an uncertain diagnosis, or a lack of any diagnosis, and that we'll really believe an unfounded "psych" diagnosis??
I think it's their way of making a patient so angry or upset that they just never return to that doctor's office. They don't care about the future consequences for the patient.
Aack, stop now, Nancy....
After MANY years, I found a real PCP, the "listen-believe-look-think" type. He's a male doctor and a young one who doesn't think he can tell what is and isn't wrong before the patient has got two words out of her mouth. Also he's family practice--I think they are better than hoity-toity internists.
Quix, your reasons for why to leave (or not leave) a doctor are great. As for minimizing the impact, before I saw my second-opinion neurologist (not counting Dr. R, who didn't give me anything that I'd consider an opinion), I wrote her a letter explaining that I did NOT have "medical student's disease" (as the previous neuro said) and that I would like her to look at me with fresh eyes and no prejudice; if she couldn't do that, would she please let me know before I came in so I could cancel and not waste her or my time.
I don't think she actually read the letter til the day of my visit, but no matter; although she didn't do extensive testing or follow-up, nor discuss things extensively with me, at least she gave no hint of thinking I was a psych case, and her reports were written very accurately. Maybe my pre-visit letter made no difference, but maybe it did.
I think we should be clear at the outset that we do NOT want to hear a "psych" diagnosis unless the doctor can make a fully clear, logical case for it, taking into account the patient's history, symptoms, and test results. You don't know? can't diagnose? aren't sure? OK, fine. Just don't BURDEN us with all those stupid, usually unfounded labels. We should state from the beginning that we won't accept such labels, and why.
Doctors don't want to "burden" patients with a diagnosis of a serious disease such as MS; why do they think it's OK to casually place upon them a heavy, sometimes devastating and harmful, burden of a "psych" diagnosis? Do they have ANY idea how BAD this is for the patient?? Do they think we're so STUPID that we can't handle an uncertain diagnosis, or a lack of any diagnosis, and that we'll really believe an unfounded "psych" diagnosis??
I think it's their way of making a patient so angry or upset that they just never return to that doctor's office. They don't care about the future consequences for the patient.
Aack, stop now, Nancy....
As usual a very interesting topic. As a matter of interest I have had the one GP for the last 25 years, he is sometimes complacent but usually caring, admits that he does not know it all and is always interested in what I have to tell him, so much so that he will google info and take notes (makes me chuckle) but he is sweet and he listens and he cares and tries to help (most important) and he recognised very early that my symptoms were neurological, before I ever even had any idea!
Neuro number one, hmmmm you were the patient, he was the educated guy! Very little time to explain or seem like care, after much confusion (mainly on my part and a bit on his) much to his credit he sent me for a second opinion, he paid my airfares to a specialist on the mainland, very expensive and top neurologist and female, whom he thought I might feel more comfortable with (yeah right), his diagnosis was probable MS, originally MS, but after quite a time lapse with repeated normal MRI it was probable MS.
The lady doctor that I flew over seas to visit spent at max 10minutes with me, told me absolutley nothing, was rude, made me feel uncomfortable and I feel wasted my time and effort. Her letter to my GP stated TM, MS or LUPUS, wide range of things hey!!!
that was it.. what a complete waste of time, I am glad I didn't pay!!!
3rd neurologist (and I still see him now), I was undecided if to tell him that I was seeing him as a second opinion or just visit, but because I had to see him out of my own city I figured that he might guess that I was after another opinion so I was upfront with him and told him that I was seeking a new view on my problems, I was very careful not to give him any info on my previous doctors opinion until he had come to his own conclusion as it was a second view or opinion that I wanted.
I see this doctor still and why because he is informative, he answers all my questions, no matter how many I have, he is thorough with his examinations and lab work, nerve tests etc. etc., he asks me lots and listens lots to what I have to say, he is caring, shows compassion and understanding, empathy, although he prob heres a million times a day that so and so is in pain he treats you like you are an individual, he is up to date on MS and he is also very active in the field of MS research, but most of all I like him, I trust him and I feel comfortable with what he tells me..... and I can be "me" with him, I can tell him "like it is", if my butt hurts, "i tell him".
If you can't get that in a doctor I think you need to be able to feel comfy with them, look elsewhere as it does make the difference!!!! I know!
Udkas. Plus you pay for a service, you need to feel that you are getting that service!
Neuro number one, hmmmm you were the patient, he was the educated guy! Very little time to explain or seem like care, after much confusion (mainly on my part and a bit on his) much to his credit he sent me for a second opinion, he paid my airfares to a specialist on the mainland, very expensive and top neurologist and female, whom he thought I might feel more comfortable with (yeah right), his diagnosis was probable MS, originally MS, but after quite a time lapse with repeated normal MRI it was probable MS.
The lady doctor that I flew over seas to visit spent at max 10minutes with me, told me absolutley nothing, was rude, made me feel uncomfortable and I feel wasted my time and effort. Her letter to my GP stated TM, MS or LUPUS, wide range of things hey!!!
that was it.. what a complete waste of time, I am glad I didn't pay!!!
3rd neurologist (and I still see him now), I was undecided if to tell him that I was seeing him as a second opinion or just visit, but because I had to see him out of my own city I figured that he might guess that I was after another opinion so I was upfront with him and told him that I was seeking a new view on my problems, I was very careful not to give him any info on my previous doctors opinion until he had come to his own conclusion as it was a second view or opinion that I wanted.
I see this doctor still and why because he is informative, he answers all my questions, no matter how many I have, he is thorough with his examinations and lab work, nerve tests etc. etc., he asks me lots and listens lots to what I have to say, he is caring, shows compassion and understanding, empathy, although he prob heres a million times a day that so and so is in pain he treats you like you are an individual, he is up to date on MS and he is also very active in the field of MS research, but most of all I like him, I trust him and I feel comfortable with what he tells me..... and I can be "me" with him, I can tell him "like it is", if my butt hurts, "i tell him".
If you can't get that in a doctor I think you need to be able to feel comfy with them, look elsewhere as it does make the difference!!!! I know!
Udkas. Plus you pay for a service, you need to feel that you are getting that service!
This is a very interesting thread.
My parents were always in the thoughts that you NEVER question a doctor, EVER. Period. The doctor is always very high on a pedestal and the answers are always right.
I have worked with many residents at the hospital in the past. I have come to learn my parents were not right on this subject. We must stand up for ourselves and if we are not comfortable with the doctor or their answers, we are "allowed" to get a second opinion. It is on our rights, and we are paying for their services.
Personally I have sought second opinions for myself and children if I didn't feel we were getting the help we needed. We must advocate for ourselves. It has helped me in numerous ways. One of my kids was sick, high fever for many days, and had a really bizarre rash on him. I went to pedi(group), and if it is a sick visit you see anyone in the practice.
He walked in and said I should let him play outside right now, due to all his bug bites. WHAT! I told him he hasn't been outside and that these were not bug bites. He assured me they were...I went home and knew something was wrong. Went back the next day, saw our pedi, who walked in and immediately walked out. He came back with gloves and a mask! He has to stay out of school for 3 weeks due to his infection and the high risk he had. He was extremely sick.
Anyway, this is turning into a book, sorry, but I have many examples of these types of situations. One even involved surgery for one of my children.
So, as far as me and my neuro, the neuro I was sent to from my PCP, examined me for about 5 minutes, didn't even look at my MRI until I insisted, told me all my symptoms were from a leftover migraine. I was a healthy young women, and "don't worry about this."
My ophthalmologist was not happy with this answer, and sent me to a MS specialist neuro. She examined me for over and hour, noticed my gait was way off, reflexes very high, on and on different things I didn't even know I had wrong. I ended up having cervical spine surgery, and was diagnosed with "probable 'MS at the time.
I stayed with her, even though I had lots of people telling me to get another opinion. I didn't, because I totally trusted her as she listens to me fully. She truly takes into consideration everything I say. She is a caring, wonderful physician and I feel lucky to have her. She even saw me for free, when I lots my health insurance after my husband got laid off last year. When she doesn't know something, she refers me to someone else for more help. (pain management, for example).
Well, I think I have said enough this morning, perhaps too much coffee?
I do like this thread, and think it should be a health page. I have learned over the years, that you must be your own advocate. No one else will.
Michelle
My parents were always in the thoughts that you NEVER question a doctor, EVER. Period. The doctor is always very high on a pedestal and the answers are always right.
I have worked with many residents at the hospital in the past. I have come to learn my parents were not right on this subject. We must stand up for ourselves and if we are not comfortable with the doctor or their answers, we are "allowed" to get a second opinion. It is on our rights, and we are paying for their services.
Personally I have sought second opinions for myself and children if I didn't feel we were getting the help we needed. We must advocate for ourselves. It has helped me in numerous ways. One of my kids was sick, high fever for many days, and had a really bizarre rash on him. I went to pedi(group), and if it is a sick visit you see anyone in the practice.
He walked in and said I should let him play outside right now, due to all his bug bites. WHAT! I told him he hasn't been outside and that these were not bug bites. He assured me they were...I went home and knew something was wrong. Went back the next day, saw our pedi, who walked in and immediately walked out. He came back with gloves and a mask! He has to stay out of school for 3 weeks due to his infection and the high risk he had. He was extremely sick.
Anyway, this is turning into a book, sorry, but I have many examples of these types of situations. One even involved surgery for one of my children.
So, as far as me and my neuro, the neuro I was sent to from my PCP, examined me for about 5 minutes, didn't even look at my MRI until I insisted, told me all my symptoms were from a leftover migraine. I was a healthy young women, and "don't worry about this."
My ophthalmologist was not happy with this answer, and sent me to a MS specialist neuro. She examined me for over and hour, noticed my gait was way off, reflexes very high, on and on different things I didn't even know I had wrong. I ended up having cervical spine surgery, and was diagnosed with "probable 'MS at the time.
I stayed with her, even though I had lots of people telling me to get another opinion. I didn't, because I totally trusted her as she listens to me fully. She truly takes into consideration everything I say. She is a caring, wonderful physician and I feel lucky to have her. She even saw me for free, when I lots my health insurance after my husband got laid off last year. When she doesn't know something, she refers me to someone else for more help. (pain management, for example).
Well, I think I have said enough this morning, perhaps too much coffee?
I do like this thread, and think it should be a health page. I have learned over the years, that you must be your own advocate. No one else will.
Michelle
Yeah, what everybody else said. Good thread; could make a good health page.
So now I remain undx, at a relatively unchanging level of symptom severity, far from my worst, but far from well. Still using the cane, and glad I have it at least once a day. Fell yesterday without it, trying to pet the dogs. Thank God it was inside on carpet. Latest neuro doc said (in October or November, IIRC) maybe if nothing's changed by May, we'll try another MRI to see if anything looks different in there. Spinal too, maybe, but he's not sold on the need for a stronger machine. Hmm. Life goes on. May's a lot closer now; guess I need to find out which docs are on Nancy's insurance plan. I digress.
Q, I do worry about the possibility that all of our "turn around and walk away" advice might sometimes enable someone who really is somaticizing. With what can we caveat this discussion that would tell such people they really might want to see that shrink after all? We have so much good information within this forum; I'd suspect that we can also help identify the cases that probably aren't neurological. Eh?
So now I remain undx, at a relatively unchanging level of symptom severity, far from my worst, but far from well. Still using the cane, and glad I have it at least once a day. Fell yesterday without it, trying to pet the dogs. Thank God it was inside on carpet. Latest neuro doc said (in October or November, IIRC) maybe if nothing's changed by May, we'll try another MRI to see if anything looks different in there. Spinal too, maybe, but he's not sold on the need for a stronger machine. Hmm. Life goes on. May's a lot closer now; guess I need to find out which docs are on Nancy's insurance plan. I digress.
Q, I do worry about the possibility that all of our "turn around and walk away" advice might sometimes enable someone who really is somaticizing. With what can we caveat this discussion that would tell such people they really might want to see that shrink after all? We have so much good information within this forum; I'd suspect that we can also help identify the cases that probably aren't neurological. Eh?
PastorDan, you bring up a point that I have thought about many times. Yes, I am sure we occasionally enable the person who merely needs attention. But, I think that is an inherent problem with anonymous forums. We can't always know. I admit that sometimes the anxiety or need for attention shines through as the primary problem, and if it is obvious, I try to address it. I've seen many of you do the same.
We have also had the rare person here who I thought was making things up for pity and attention.
In the end, I have decided, that the only way we can be effective is to believe what people tell us and be very slow to try to sift out those whose symptoms are not what they appear. Because we can't know, it is far safest to believe all. I don't want to turn into the semi-skeptic looking to ferret out the real from the imagined. In true somatoform disorder the people suffer as much as a person with true neuro disease. Unless the signs of depression, or magnifying simple sensations are obvious, I think we do the greatest good by taking people at face value, especially for the first few encounters.
That is what I have decided for me. First, believe....
Quix
We have also had the rare person here who I thought was making things up for pity and attention.
In the end, I have decided, that the only way we can be effective is to believe what people tell us and be very slow to try to sift out those whose symptoms are not what they appear. Because we can't know, it is far safest to believe all. I don't want to turn into the semi-skeptic looking to ferret out the real from the imagined. In true somatoform disorder the people suffer as much as a person with true neuro disease. Unless the signs of depression, or magnifying simple sensations are obvious, I think we do the greatest good by taking people at face value, especially for the first few encounters.
That is what I have decided for me. First, believe....
Quix
You make a lot of sense, too. Besides, skepticism is what we get from our doctors; why come here for more of it?
I won't go to a veterinarian I do not like, a mechanic, a hairdresser, or dentist, why should I not go with my gut on a Neurologist?
Quix:
Hopefully this post may be helpful to others. Like many of you, I have had some very negative experiences with a number of neurologists. I have been having symptoms now for almost 8 years and have gone through that process where I see doctors, with many different tests and referrals ordered, and then just give up with the exhausting process.
I'd like to make some suggestions in terms of selecting a doctor. If you have a doctor that you trust, ask them if they would recommend a neurologist who specializes in demyelinating diseases. Or if you know someone who it being treated for MS, ask them for their opinion of their doctor and get the name if they give a positive review. Lastly, contact the National Multiple Sclerosis Society for a service provider referral.
The National Multiple Scleriosis Society maintains a list of doctors/clinics specializing in the diagnosis and treatment of MS. Doctors are added to the list based on surverys sent to neurologists in the state and if they pass muster, they are added to the list. Clinics must pass a thorough review conducted by the Society before the are included in the list.
The person with whom I spoke was most helpful and gave me tips in terms of trying to decide on a provider. She recommended that I ask if they specialize in MS and demyelinating diseases. Another question to ask is how many patients are you currently treating for MS. The receptionist may not be able to answer these questions, so you may need to ask to speak to someone (PA) who will be able to answer these questions for you.
I had a follow up with an ENT today who told me on my first visit that my disequilibrium and lightheadness was not vestibular and after hearing my hstory, he ordered an MRI of the brain. Today he referred me to 2 doctors who specialize in MS that he believes are highly competent. They are on the Society list. He stressed that there are many neurologists out there that just do not have the expertise to deal with the complexities of demyelinating diseases. I then told him of some of my negative experiences. My PCP wanted to me to go to Yale New Haven, and I expressed concern over the lack of specific names and the distance.
Oddly enough, I was leafing through a magazine while waiting to see the doctor. Cover article was "Top 100 Doctors in Connecticut". In that list was a neuroligist that I saw in 2007. I asked him if I could have Lyme Disease. He told me flat out that it was not Lyme when I had never been tested for it! Needless to say, I did not go back.
PS- is there any way to add spell check to these forums? It takes me forever to post with my language problems!
Hopefully this post may be helpful to others. Like many of you, I have had some very negative experiences with a number of neurologists. I have been having symptoms now for almost 8 years and have gone through that process where I see doctors, with many different tests and referrals ordered, and then just give up with the exhausting process.
I'd like to make some suggestions in terms of selecting a doctor. If you have a doctor that you trust, ask them if they would recommend a neurologist who specializes in demyelinating diseases. Or if you know someone who it being treated for MS, ask them for their opinion of their doctor and get the name if they give a positive review. Lastly, contact the National Multiple Sclerosis Society for a service provider referral.
The National Multiple Scleriosis Society maintains a list of doctors/clinics specializing in the diagnosis and treatment of MS. Doctors are added to the list based on surverys sent to neurologists in the state and if they pass muster, they are added to the list. Clinics must pass a thorough review conducted by the Society before the are included in the list.
The person with whom I spoke was most helpful and gave me tips in terms of trying to decide on a provider. She recommended that I ask if they specialize in MS and demyelinating diseases. Another question to ask is how many patients are you currently treating for MS. The receptionist may not be able to answer these questions, so you may need to ask to speak to someone (PA) who will be able to answer these questions for you.
I had a follow up with an ENT today who told me on my first visit that my disequilibrium and lightheadness was not vestibular and after hearing my hstory, he ordered an MRI of the brain. Today he referred me to 2 doctors who specialize in MS that he believes are highly competent. They are on the Society list. He stressed that there are many neurologists out there that just do not have the expertise to deal with the complexities of demyelinating diseases. I then told him of some of my negative experiences. My PCP wanted to me to go to Yale New Haven, and I expressed concern over the lack of specific names and the distance.
Oddly enough, I was leafing through a magazine while waiting to see the doctor. Cover article was "Top 100 Doctors in Connecticut". In that list was a neuroligist that I saw in 2007. I asked him if I could have Lyme Disease. He told me flat out that it was not Lyme when I had never been tested for it! Needless to say, I did not go back.
PS- is there any way to add spell check to these forums? It takes me forever to post with my language problems!
I gave up all but the most cursory spell-checking long ago. Don't worry about it.
The Evil Neuro who was responsible for telling me I was too old (not!), had a normal MRI (not!), didn't need an LP (did!), and belittled my complaints was not only on the NMSS list, but also listed as one of our city's top 100 doctors.
I believe looking to lists is a last resort. I agree with asking doctors whom you respect, asking neurologic PTs, nurses, and related people who might know.
I believe in going to a live support group and asking. People are not shy about telling you who they adore and who the stinkers are.
There are online rating services which often do't have enough data to find a doctor. That is why I heartily recommend that we all go to them and name the rotten apples and praise the good docs. This is for those that come after us. These include ratemds.com and msneuroratings.org. This last was recently scrubbed clean and they have no ratings. We owe it to all those searching to go and rate our experiences.
The most stringent organization reviewing MS clinics, and sometimes individuals is the Consortium of MS Clinics. Their lists are not long, but are world wide. They also have an elective test that individual doctors can take at their discretion proving in depth knowledge and understanding of MS.
Quix
Quix
The Evil Neuro who was responsible for telling me I was too old (not!), had a normal MRI (not!), didn't need an LP (did!), and belittled my complaints was not only on the NMSS list, but also listed as one of our city's top 100 doctors.
I believe looking to lists is a last resort. I agree with asking doctors whom you respect, asking neurologic PTs, nurses, and related people who might know.
I believe in going to a live support group and asking. People are not shy about telling you who they adore and who the stinkers are.
There are online rating services which often do't have enough data to find a doctor. That is why I heartily recommend that we all go to them and name the rotten apples and praise the good docs. This is for those that come after us. These include ratemds.com and msneuroratings.org. This last was recently scrubbed clean and they have no ratings. We owe it to all those searching to go and rate our experiences.
The most stringent organization reviewing MS clinics, and sometimes individuals is the Consortium of MS Clinics. Their lists are not long, but are world wide. They also have an elective test that individual doctors can take at their discretion proving in depth knowledge and understanding of MS.
Quix
Quix
Gee, Q, can WE take that test? Spending 14+ months here makes me wonder if I don't have as much in depth knowledge and understanding of MS as your typical neuro. Well, probably not, but just the same....
Is neurology as a specialty more prone to dissatisfied patients and intellectually lazy practitioners than other specialties?
BTW & FWIW, I cannot recall a negative experience with a female physician, but my experience is admittedly limited to a few events.
Is neurology as a specialty more prone to dissatisfied patients and intellectually lazy practitioners than other specialties?
BTW & FWIW, I cannot recall a negative experience with a female physician, but my experience is admittedly limited to a few events.
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