Whether you are a first time neurology patient or recurrent visitor to a movement disorders specialist, it would help to take a few minutes to think about your history so that you and your doctor can make the most of your visit. It is important to us that you feel understood, and likely important to you too, that that we learn as much as possible about your symptoms. Because we do this all the time, and are very familiar with these neurologic problems, neurologists have some insight into how to have this conversation. This article is a sort of a guide to what to do, and what not to do.
First, let’s clear up the idea that doctors are talking to each other on computers, or that doctors can see everything on other computers at other offices.
We are not, though when we ask about history, we are often told, “it should be in the computer,” or “in Dr. So-and-so’s chart.” If this is your first time seeing a neurologist, you shouldn’t assume your new doctor can see your referring doctor’s chart in a computer. We usually cannot for reasons given below. Most of the time the records must be sent from one office to another, and it is a task choosing what to send, and literally a task for someone in the referring office to send those files. You may think this is all squared away because your doctor made the referral. But, don’t assume that records from referring doctors have actually arrived and that the new doctor knows the medical facts of your case. That might also be a problem. Let’s walk through how this works in 2019.
A neurologist is consulted by another doctor. This means that other doctor has asked for help. But, the communication is not always clear. In spite of the fact that we have moved into the age of electronic medical records (EMR) on the dreaded computer (frankly how a lot of us feel about it), we are not all connected.
Due to legal and technical issues often the consultant has not been sent anything through a computer.
Instead, they have been faxed a few pieces of demographic information about who you are, where you live, what your insurance is, and hopefully the question being asked. Sometimes there are a few office notes. Amazingly, the reason for consult is not always included (though Medicare and insurance carriers usually require this information). This issue slows down time for getting an appointment. There are also a huge variety of formats for the forms sent. Sometimes the consultant cannot find needed information because it is buried on page five (or page 50 for that matter). Sometimes the name of the person has been altered to protect identity. Great, but who is this? Sometimes the computer coding is so heavy that a practically unreadable document is sent. Sometimes a copy of a copy is faxed and all abnormal (and therefore highlighted) lab values have become illegible.
A lot of this has to do with huge changes in medicine over the last couple decades, resulting in a clunky system that is far from perfect. We are required to use computers, and under Medicare guidelines can actually be fined for not using them. Still, we are unable to communicate as easily as you might think. Many different software vendors employ armies of information technology people who write complex software that results in systems that don’t talk and are not easy to learn. Most doctors recoil at the phrase “mandatory computer training.” Aside from the steep learning curve, software changes all the time, meaning two things: you’ve gotta keep up (who has the time?), and there will be unintended consequences of software upgrades, which some of us call “downgrades.” And, seemingly well-intentioned laws are not so easy to navigate.
Under Federal HIPAA law, your medical history is protected, and unless you have signed a release of information, it will not be available. HIPAA is a big reason why computers at different offices or organizations are almost never connected.
Even if you have signed a release, your records may be incomplete.
Your referring doctor might think you have Parkinson disease (PD), yet the records that arrive at the neurology office may be incomplete to the point of little or no supporting documentation about the signs or symptoms (this is often unintentional). The consulting neurologist wants to know what the other doctor has seen to lead to this consultation. Another scenario is that your referring doctor might have requested a second opinion. In that case, sometimes the notes that arrive do not include the first neurologist’s evaluation. These examples are problems on many levels. Consider these actual examples I have seen in referrals for which I was sent no records (and was therefore unaware) of a dangerous reaction to a medication, a critical lab value, or a brain aneurysm. I would recommend that you make sure the notes from your prior neurologist are sent to the consultant’s office to avoid a counterproductive and potentially dangerous situation.
There is also a simple fact of modern healthcare that time is limited.
Doctors see a lot more patients in a day than they used to, and are often unable to complete all of the notes, paperwork, etc., that piles up each day. An appointment without records will probably waste at least some of the appointment, and might result in a second “get to know you” visit in the future. No one thinks that is ideal. Consider it this way: you’ve waited weeks or months for an appointment only to find the doctor has no idea about your complex history, and can’t do much to help until they do. When is that next appointment going to be open?
Brain imaging (MRI, CT)
Brain images are not always necessary in PD, but sometimes are ordered when there is a question about some other cause of your symptoms. MRI of the brain is a very complex test which takes hundreds of images. To a neurologist this a way to see the anatomy and take into account many different factors. But, the way we see these films has changed. In the “old days” before computers were everywhere in medicine, images were on film, often transported by the patient if going from one institution to another. These days brain images are stored as huge digital files with hundreds of images too big to “send” over the internet. If your images are from another hospital or network, they are probably not “on the computer” at the new doctor’s office. The images are almost never sent by referring doctors for a variety of reason, firstly, they don’t have them. Referring doctors are not usually neurologists or radiologists, and often haven’t seen the images. Many referring doctors rely on radiology to read the films and give a report. They will then tell the patient something about the study, and the patient will tell the neurologist about that conversation. However, “I was told it was fine” just will not do.
Sometimes the radiology report is faxed with the referral. That is helpful, but neurologists usually want to see the images. Your brain anatomy is highly unique and may tell a neurologist a great deal about you. A good plan is for you to call the film library at your hospital or radiology department and get the images on a computer disc to bring to your appointment. Otherwise, waiting to see the images at the next visit slows your care down and leaves your doctor with an incomplete understanding of you and your workup.
Here I should mention that I have met a few patients who have intentionally tried to get a “fresh start” with no prior records. It is not a good idea. If anything, intentionally withholding prior records is a red flag to doctors. Both sides need to be completely open and honest. Give your new doctor a chance to read why the prior one came to the conclusion they did, even if you disagree.
Even when records have been forwarded, they may not tell the complete story. This is why it is very helpful to think about your PD history and come prepared to answer questions about it. Interview styles vary, but in my own practice when first meeting a patient, I will typically ask dozens of “closed-ended” questions which can be answered with a single, or just a few words. I can learn a lot quickly this way. So, be succinct. For example, if I ask what year the tremor started, the answer should be something like “1995.” The answer should not be expansive or tangential, such as this response in which names and details have been changed to illustrate a point:
“Let’s see, I was visiting my cousin Ed. I do every spring. He has an apple orchard up in Camden. We were going to walk around the property, and take in the sunset. It’s beautiful up there. Anyway, later that day after we had been all around the place and eaten dinner, I was drinking coffee. Ed makes good coffee. I don’t usually like it, but his is so good. Ed asked me if I wanted another and I said “no,” because I don’t usually drink it, and especially not that late. Then Ed said he had been reading on the internet about tremors. Then he said he had been noticing some shaking with me. We both first thought it was something else. Of course, it could have been the coffee, but then I haven’t had coffee today, and I’m shaking. And, it’s getting worse, so, probably not the coffee. After Ed I went to my doctor and first he thought it was essential tremor. But then I started reading on the internet myself…” and so on.
After that paragraph we still do not know the answer to the question of what year the tremor started (though Ed’s place sounds nice). Mainers tell me this is the “all the way around barn” approach to answering a question. I am probably not going to make it through my dozens of other questions if the responses keep up like this. I would advise patients to listen to the question being asked and answer it, only it, one question at a time.
When taking a history, a neurologist is looking for a timeline of specific details from your past in order to piece together your case in a way that leads them back to the proper diagnosis and an understanding of the progression of your illness. In the case of PD there are several illnesses or drug exposures that might be mimics, and one of the things neurologists who interview patients is trying to do is eliminate those other items by asking focused questions.
Like a detective, a meeting with a neurologist sometimes feels like less of a conversation than an interrogation. But there are good reasons for this.
I would recommend you not try to direct the conversation, but simply let the neurologist ask the questions they need to cover. If something is left out, then let them know at the end. In your own best interest, you should prepare and come armed with lots of information about your own history. I have included a form with this article which covers most of the things we will ask about. Please fill out the form, it will help a lot.
For your consult, you should specifically think about what year your first symptoms started, and what those symptoms were, for example: loss of sense of smell, constipation, REM behavior disorder (acting out vivid dreams in the night, thrashing in your sleep, screaming), tremor, stiffness of muscles, slowness of movement, changes in the way you walk, balance problems, falls, soft speech, memory issues, mood issues, what studies were done. If you have had gene testing or other unusual labs, bring the results. Three labs neurologists usually want to know about in PD are vitamins B6, B12, and D. Other labs we commonly might want to see include CMP, CBC, ESR, A1C, TSH.
Make a list of medications and doses of those medications you have tried for PD.
Write down any side effects you may have had with medications. Think about how the symptoms of your disease changed over time. If we established for example, that your hand tremor started in 1995, arrange your disease as it progressed over time, such as this: “It slowly worsened and my handwriting changed in 1996 or so. In 1998 my left hand started to shake and the same year I noticed shuffling when I walked.”
Also think about your family history.
If others in your family have had PD or something like it, ask them about it, and make a list of those family members along with any known diagnosis.
Who should be present at my consult or office visits?
I try whenever possible to collect history directly from the patient. Sometimes, especially if one has memory problems, it is helpful to have someone else present who can give a focused history. Someone else does not mean everyone else however. It is generally a very good idea to limit the number of other people present in the room at the time of a neurology visit, as it is difficult to get a clear history from multiple sources. Also, if you bring someone else, be consistent. Bringing a different friend or family member to every appointment creates a lack of continuity, and typically consumes a lot of the appointment time in order to bring the new person up to speed, or go over history that has already been covered. That is usually not helpful for the patient and is often counterproductive.
So that your neurologist can spend the entire visit with you, arrive on time.
It seems obvious, but every day in my clinic one or more patients will arrive late. Sometimes late patients cannot be seen. In my office, new patient consults are asked to arrive 15 minutes early for the first visit. This time is important for the staff to make sure certain records are correct, go over medications, check vital signs, and so on. However, a significant number of patients ignore this request, and that is not helpful.
If you have a follow-up visit, and there is some new issue, a change of some kind, or specific questions, let your doctor know at the beginning of the appointment. Urgent issues should be discussed first. Don’t wait until the end of the appointment to mention you were recently in the emergency room, for example.
Do not change, stop, or start PD medications without your neurologist.
Call if there is a problem.
Most offices have a medication refill line and a nurse triage line. Triage is for urgent issues. Routine questions should be addressed at follow up, not the phone. But, if you are not sure how serious something is, it is better to run it by a nurse. Neurology nurses tend to have a very good idea of what is important and what is not. That is what is triage is all about. There is also a neurologist on-call all the time. If your doctor is on-call they are probably busy tending to hospital or emergency room patients. After-hours issues in PD rarely warrant paging a doctor. Medical emergencies should of course be directed to 911.
I hope this helps.
Thanks to Grace Plummer, LCSW, Sarah Savard, RN, and Liz Stamey, RN, LMT for review and commentary.