Disclaimer: If you are newly diagnosed please take a deep breath. I want to personally welcome you to MS World and believe you will not find a place with more compassion or collective wisdom to help you on your journey. The process is often overwhelming and confusing at first, but it does get easier. Many wonderful people are here willing to help you learn about and to fight multiple sclerosis. I just hope this posting provides assistance to someone out there in need.
This information is not be medical advice! I am not a doctor or even in patient care … just some strange person that your mom may have one day warned you about.
I am a regular in the MS World chat rooms and we often get questions about advice on changing neurologists. The majority of MS World visitors have changed neurologists at least once and some several times. If you are considering switching neurologists you are not alone.
Be Your Own Patient Healthcare Advocate
First off, please understand that you need take responsibility for your own healthcare by becoming your own healthcare advocate.
Research your condition(s) and become familiar with your own treatment plan. Keep a list of all the medications you take complete with dosage and reason. When you get a new medicine you can remind the doctor of your current meds and double check with your pharmacist about any reactions or warning signs.
Make a habit of asking for and systematically keeping your own medical, lab and other records. State and Federal laws dictate your access rights to your medical records. Understand that most laws also permit your provider to charge you for copies. Keep a journal of your medical history and symptoms. You can use a basic notebook or a website like patientslikeme.com for journal purposes.
Having a good set of records will pay off if you decide to change neurologists or have to see another doctor or specialist.
Making your doctor's visits productive
Prior to my appointment, I write down new symptoms and current concerns or questions that I may have. I type them up and print them out in LARGE font for both my doctor and myself. I DO expect them to read it and respond to each item and have never had a doctor just blow my list off. It can actually make it easier for them to do their job. I can make notes on the printed list, but it also means I do not have to remember my questions. Keep your own notes of your visit and right down critical things in your journal for later reference.
Additionally, my beautiful wife goes with me to important visits. She may interpret something the doctor says different, has her own set of questions and has a brilliant memory to help me keep things (and me) in order.
Second Opinions
It is often wise to get a 2nd opinion when dealing with MS and other serious or chronic diseases. You do not have to be unsatisfied with your current neurologist to get a 2nd opinion. The neurologist that gave me a 2nd opinion has actually become my neurologist of record.
Common reasons people want to change doctors
Communication: Mannerisms vs. Meanness
Many specialists/scientific researchers can be introverted and therefore not "people-friendly." It doesn't necessarily mean they aren't friendly, but their mannerisms may not be comfortable. They may also be obsessed with their MS research which does have benefits, but also could be a hindrance to patient care.
Are they actually providing you with outstanding medical care, but just with a poor bedside manner? (note: yes, bedside manner is a part of medical care)
Personally, I do not mind if an accountant isn't warm and fuzzy provided they keep the books perfectly. The same goes for my neurologist. I want them to be competent with a desire to help me, but I can handle a certain level of "gruffness" in the process. My current neurologist can be considered “gruff,” but he certainly isn’t mean, disrespectful or hostile.
Likewise, they can be sweet as can be, but if they aren't competent it is time to move on.
Follow up
Doctor’s offices can be overwhelming at times for both you and the doctors. Offices also employ humans and from time to time they will make mistakes. If a doctor hasn’t followed up, please follow up with them. You will need to determine if their lack of follow up is a pattern or an exception. During a visit you can even ask, “if I haven’t heard back from you by Thursday should I call your office.” This is a way of setting an expectation for both of you and it gives you an action item. Then Thursday, “Dr. Whatever told me to call back today for an update.”
Feeling unimportant
Hopefully, your doctor has enough patients to pay his bills and keep the doors open. The problem is you do not want to feel like a “number” or treated in a flippant manner. I have heard stories where doctors would say, “just be grateful you are not in a wheel chair. ” The doctor may actually be saying, “MS is a cruel disease where many are worse off than you. Count your blessings that today you have your mobility.” If the doctor is actually ignoring or minimizing your personal symptoms than consider your options. Again, there is a difference between poor mannerisms and poor manners.
Long waits (one of my pet peeves)
Most patients are finding longer waits at their doctor’s office. Is the wait problem the exception or the rule?
Does the doctor also spend a lot of time with you and your concerns? If the doctor makes you wait forever and then doesn’t spend quality time with you … that speaks volumes.
My wife’s suggestion is to request the first appointment of the day or after lunch? This should reduce your wait.
My problems are “insignificant”
Chronic diseases may have common symptoms that are beyond a doctor’s control. If you have the flu you are probably going to cough and have body aches … that is just part of the flu. Having a slight and permanent numb spot is a way of life for MS patients.
A “like duh” reaction may not feel good, but the neurologist may not be actually ignoring your symptoms. Again, you may be able to better gauge their response by asking questions. “Doctor you did not seem surprised by my leg numbness, is this expected and something we have no treatment for?”
Many people are comforted in the chat rooms by just knowing their symptoms are not unique and they are not “crazy.” Others just appreciate being around people that can understand and relate to them.
Craziness or Depression
You think you have REAL problems and the doctor thinks you are just crazy or depressed. Unfortunately, this an all too common complaint. There may be a combination of real and perceived problems going on. See if you can get the doctor to isolate them and treat them accordingly. The doctor may think your problem is all in your head --- if you have multiple sclerosis they may just be right.
If the doctor believes you have “depression” then a treatment plan should be devised for it. Many MS patients battle depression from time to time – it can also be a symptom of the disease and some of our commonly prescribed medication.
I am not saying you shouldn’t get another doctor, but don’t refuse depression treatment if it will bring you some relief. Then you can pursue the other items with this or another doctor.
Deciding to Complain
Should you complain and try to make it better? Should you complain on departure?
It really is your choice if you want to complain or not. Some patients complain and the problem gets better and for others it can actually get worse. It is not necessary to confront your neurologist about “their” problems, but it may help the next patient or even give you peace of mind.
If the problem is process and not medical you may be able to discuss the situation with the practice manager and get help. Practice Managers can be extremely helpful if you are looking for test results or need an “emergency” appointment. If your neurologist truly doesn’t care they probably won’t care about your parting complaints either.
If you are leaving for “front office“ issues, the doctor may not even be aware of them. Do not assume the doctor knows the nurse did not call you back for the past 513 weeks. Explaining the situation to the doctor may help them correct the problem for the next patient.
If your experience was truly horrific, please consider filing a grievance with the appropriate medical board. For example, if the doctor was drinking booze and throwing scalpels at you please file official complaints with the appropriate authorities.
If you do decide to complain please do so respectfully and politely in person or in writing. There is no need to burn bridges in this process. The neurological community isn't very big and you don't need a reputation for being a hostile patient. Who knows you may find out your current neurologist wasn't so bad after all.
The Big Picture
Are your medical needs being met? If so, please consider the bigger picture versus your level of dissatisfaction.
If your medical needs are not being met, I would encourage you to seek out other treatment options.
I would suggest you not leave your current neurologist until you have a viable alternative. In the process of finding a “new” neurologist you may find a new appreciation for your current one.
Finding a new neurologist
The easiest place to start may be calling the National Multiple Sclerosis Society at 1-800-FIGHT-MS and ask for a MS specialist referral. You can also ask someone in a local support group, or other ms patients in your area. You may also get feedback by using the online forums or chat room right here at MS World.
You will have fewer options in rural areas and more options in large metro areas or around relevant teaching/research facilities. I would again caution you not to fire your current doctor until you have a capable replacement. It is often easier to get treatment as an existing patient rather than a new one.
The end goal is for you to get competent medical care and have a solid game plan to fight multiple sclerosis.
Godspeed to one and all!
This information is not be medical advice! I am not a doctor or even in patient care … just some strange person that your mom may have one day warned you about.
I am a regular in the MS World chat rooms and we often get questions about advice on changing neurologists. The majority of MS World visitors have changed neurologists at least once and some several times. If you are considering switching neurologists you are not alone.
Be Your Own Patient Healthcare Advocate
First off, please understand that you need take responsibility for your own healthcare by becoming your own healthcare advocate.
Research your condition(s) and become familiar with your own treatment plan. Keep a list of all the medications you take complete with dosage and reason. When you get a new medicine you can remind the doctor of your current meds and double check with your pharmacist about any reactions or warning signs.
Make a habit of asking for and systematically keeping your own medical, lab and other records. State and Federal laws dictate your access rights to your medical records. Understand that most laws also permit your provider to charge you for copies. Keep a journal of your medical history and symptoms. You can use a basic notebook or a website like patientslikeme.com for journal purposes.
Having a good set of records will pay off if you decide to change neurologists or have to see another doctor or specialist.
Making your doctor's visits productive
Prior to my appointment, I write down new symptoms and current concerns or questions that I may have. I type them up and print them out in LARGE font for both my doctor and myself. I DO expect them to read it and respond to each item and have never had a doctor just blow my list off. It can actually make it easier for them to do their job. I can make notes on the printed list, but it also means I do not have to remember my questions. Keep your own notes of your visit and right down critical things in your journal for later reference.
Additionally, my beautiful wife goes with me to important visits. She may interpret something the doctor says different, has her own set of questions and has a brilliant memory to help me keep things (and me) in order.
Second Opinions
It is often wise to get a 2nd opinion when dealing with MS and other serious or chronic diseases. You do not have to be unsatisfied with your current neurologist to get a 2nd opinion. The neurologist that gave me a 2nd opinion has actually become my neurologist of record.
Common reasons people want to change doctors
Communication: Mannerisms vs. Meanness
Many specialists/scientific researchers can be introverted and therefore not "people-friendly." It doesn't necessarily mean they aren't friendly, but their mannerisms may not be comfortable. They may also be obsessed with their MS research which does have benefits, but also could be a hindrance to patient care.
Are they actually providing you with outstanding medical care, but just with a poor bedside manner? (note: yes, bedside manner is a part of medical care)
Personally, I do not mind if an accountant isn't warm and fuzzy provided they keep the books perfectly. The same goes for my neurologist. I want them to be competent with a desire to help me, but I can handle a certain level of "gruffness" in the process. My current neurologist can be considered “gruff,” but he certainly isn’t mean, disrespectful or hostile.
Likewise, they can be sweet as can be, but if they aren't competent it is time to move on.
Follow up
Doctor’s offices can be overwhelming at times for both you and the doctors. Offices also employ humans and from time to time they will make mistakes. If a doctor hasn’t followed up, please follow up with them. You will need to determine if their lack of follow up is a pattern or an exception. During a visit you can even ask, “if I haven’t heard back from you by Thursday should I call your office.” This is a way of setting an expectation for both of you and it gives you an action item. Then Thursday, “Dr. Whatever told me to call back today for an update.”
Feeling unimportant
Hopefully, your doctor has enough patients to pay his bills and keep the doors open. The problem is you do not want to feel like a “number” or treated in a flippant manner. I have heard stories where doctors would say, “just be grateful you are not in a wheel chair. ” The doctor may actually be saying, “MS is a cruel disease where many are worse off than you. Count your blessings that today you have your mobility.” If the doctor is actually ignoring or minimizing your personal symptoms than consider your options. Again, there is a difference between poor mannerisms and poor manners.
Long waits (one of my pet peeves)
Most patients are finding longer waits at their doctor’s office. Is the wait problem the exception or the rule?
Does the doctor also spend a lot of time with you and your concerns? If the doctor makes you wait forever and then doesn’t spend quality time with you … that speaks volumes.
My wife’s suggestion is to request the first appointment of the day or after lunch? This should reduce your wait.
My problems are “insignificant”
Chronic diseases may have common symptoms that are beyond a doctor’s control. If you have the flu you are probably going to cough and have body aches … that is just part of the flu. Having a slight and permanent numb spot is a way of life for MS patients.
A “like duh” reaction may not feel good, but the neurologist may not be actually ignoring your symptoms. Again, you may be able to better gauge their response by asking questions. “Doctor you did not seem surprised by my leg numbness, is this expected and something we have no treatment for?”
Many people are comforted in the chat rooms by just knowing their symptoms are not unique and they are not “crazy.” Others just appreciate being around people that can understand and relate to them.
Craziness or Depression
You think you have REAL problems and the doctor thinks you are just crazy or depressed. Unfortunately, this an all too common complaint. There may be a combination of real and perceived problems going on. See if you can get the doctor to isolate them and treat them accordingly. The doctor may think your problem is all in your head --- if you have multiple sclerosis they may just be right.
If the doctor believes you have “depression” then a treatment plan should be devised for it. Many MS patients battle depression from time to time – it can also be a symptom of the disease and some of our commonly prescribed medication.
I am not saying you shouldn’t get another doctor, but don’t refuse depression treatment if it will bring you some relief. Then you can pursue the other items with this or another doctor.
Deciding to Complain
Should you complain and try to make it better? Should you complain on departure?
It really is your choice if you want to complain or not. Some patients complain and the problem gets better and for others it can actually get worse. It is not necessary to confront your neurologist about “their” problems, but it may help the next patient or even give you peace of mind.
If the problem is process and not medical you may be able to discuss the situation with the practice manager and get help. Practice Managers can be extremely helpful if you are looking for test results or need an “emergency” appointment. If your neurologist truly doesn’t care they probably won’t care about your parting complaints either.
If you are leaving for “front office“ issues, the doctor may not even be aware of them. Do not assume the doctor knows the nurse did not call you back for the past 513 weeks. Explaining the situation to the doctor may help them correct the problem for the next patient.
If your experience was truly horrific, please consider filing a grievance with the appropriate medical board. For example, if the doctor was drinking booze and throwing scalpels at you please file official complaints with the appropriate authorities.
If you do decide to complain please do so respectfully and politely in person or in writing. There is no need to burn bridges in this process. The neurological community isn't very big and you don't need a reputation for being a hostile patient. Who knows you may find out your current neurologist wasn't so bad after all.
The Big Picture
Are your medical needs being met? If so, please consider the bigger picture versus your level of dissatisfaction.
If your medical needs are not being met, I would encourage you to seek out other treatment options.
I would suggest you not leave your current neurologist until you have a viable alternative. In the process of finding a “new” neurologist you may find a new appreciation for your current one.
Finding a new neurologist
The easiest place to start may be calling the National Multiple Sclerosis Society at 1-800-FIGHT-MS and ask for a MS specialist referral. You can also ask someone in a local support group, or other ms patients in your area. You may also get feedback by using the online forums or chat room right here at MS World.
You will have fewer options in rural areas and more options in large metro areas or around relevant teaching/research facilities. I would again caution you not to fire your current doctor until you have a capable replacement. It is often easier to get treatment as an existing patient rather than a new one.
The end goal is for you to get competent medical care and have a solid game plan to fight multiple sclerosis.
Godspeed to one and all!
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