Your visit to the neurologist is successful if, upon leaving the office, you know what’s wrong and what the neurologist can do to make you better. The visit is less successful if, upon leaving the office, you don’t know what’s wrong, but the neurologist has told you, in words you can understand, why he or she doesn’t know what’s wrong—and can tell you what he or she will do to find out what’s wrong.
An unsuccessful visit is one in which you leave the office without knowing what’s wrong and the neurologist can’t tell you how he or she will determine the problem. Ideally you should not leave the neurologist’s office feeling more anxious, depressed, and confused than before. Even in this age of shorter visits, harried doctors, and more complicated problems, there are steps you can take to make your visit as successful as possible.
Start by asking yourself why you’re seeing the neurologist. If you can’t explain “why” in a few words, the neurologist might not be able to help. He or she is a neurologist, not a mind reader, and needs to hear from you what the problem is before trying to adddress it.
When you visit the neurologist, you may be anxious or depressed, thinking: “What’s wrong? Is it bad? Will the neurologist know—and be able to help?” You may be angry (whether you realize it or not), thinking: “Why me? Why do I have to have a disease of the brain? Why do I have to see a neurologist? And why do I have to pay for the privilege?”
While they are perfectly understandable, try not to let these thoughts overwhelm you or get in your way of understanding this disease. If, after being diagnosed, you don’t agree with or like the diagnosis, don’t “shoot the messenger.” The neurologist may be wrong, in which case you’re likely to resent the message all the more, but the neurologist may be right—and resenting the messenger doesn’t change the message! Remember, you are the one who might have PD and needs help; the neurologist is there to help you.
If you think you have PD, or your family doctor thinks you have PD and refers you to a specialist, you may wonder how to determine if the specialist is good. If your family doctor picked the specialist, it probably means that your doctor has worked with him or her before, and knows the specialist’s credentials and abili-ties. However, in an era where Health Maintenance Organizations (HMOs) and insurance companies limit some choices, this may not be the case. Ask your family doctor, or the specialist (or the specialist’s office manager) the following questions:
1. Is the specialist a neurologist? To practice as a neurologist a doctor, an MD (medical doctor) or a DO (a doctor of osteopathy), must complete an accredited 3-year neurology training program.
2. Is the neurologist board certified? Upon completion of their training program, a neurologist takes an examination in neurology and psychiatry. For a neurologist, 75% of the questions are on neurology and 25% are on psychiatry. Upon successful completion of the examination, neurologists are designated by the American Board of Psychiatry and Neurology as being certified in Neurology. Board certification (as evidenced by a diploma) is like a Good Housekeeping Seal of Approval (although it is not a guarantee of competence). There are exceptions, though; the best neurologist I knew was not board-certified because he wouldn’t take the time to bother with the test.
3. Is the neurologist a movement disorder specialist? Within the field of neurology, there are accredited (by separate Boards) sub-specialties. Movement disorders (which includes PD) is a sub-specialty, but is not accredited by a separate Board. Movement disorders include PD (approximately 80% of the practice), the PD-like disorders (multiple system atrophy, progressive supranuclear palsy, corticobasilar degeneration, dystonia, essential tremor, Huntington disease, rest-less leg syndrome, tardive dyskinesia, and Wilson disease).
To be called a movement disorder specialist, a neurologist must take a 1- to 3-year fellowship in a movement disorder program after finishing neurology training. Usually, the specialist will display a certificate attesting to completion of the fellowship. If you do not see such a certificate, ask where the specialist trained in movement disorders. There are excellent neurologists who treat PD but did not complete movement disorder fellowships.
They may, like most movement disorder specialists, belong to the Movement Disorder Society (MDS). The MDS is an excellent organization, but membership does not guarantee competence; any neurologist or researcher can belong if they pay the annual fee.
Once you have found a neurologist to try, prepare for your first visit. You may be anxious or afraid and be worried that you will not remember everything you want to ask, yet try not to come with a long list. List the 3 or 4 main problems, complaints, or concerns in their order of importance to you. If you’re satisfied the doctor has answered your main questions and there are others you want the doctor (and not his staff ) to answer, make a return appointment.
If you are seeing the neurologist because you think you have PD, say exactly what prompted you to come. The following are examples: “I think I have PD because I have a tremor.” “My wife (or a friend or another doc-tor) thinks I might have PD.” “I saw Muhammad Ali or Michael J. Fox on television and I think I have what they have.” If you can, take a family member or friend with you on your first visit to provide emotional sup-port and comfort.
They are more likely to be objective and hear what the specialist said, rather than what you thought he said, and can help you to remember what is recommended if you become too overwhelmed or anxious to remember it all. A word of caution: too many family members or friends in the room change the dynamics of the visit. If you have small children, get a babysitter. Children may be frightened by being in a doctor’s office, and they can cry and be disruptive.
Look for a courteous, caring, and polite staff, a clean office, and information on PD: books, pamphlets, and newsletters. Look for a nurse or an assistant to ask you to fill out forms containing questions about PD. Such questions tell the neurologist what he or she thinks is important. The questions asked, the clarity with which they are asked, and the detail into which they go will give you an idea as to how the neurologist thinks. Waits of more than half an hour are rarely justified.
Before your visit, ask whether the neurologist goes to the hospital before seeing patients. If he or she does, this may result in delays because of unforeseen emergencies. If the neurologist goes to the hospital, ask for an appointment on a day he or she does not go. If you asked the neurologist to “squeeze you in,” and he or she did so, expect a delay. A doctor who will see you as an emergency or as a favor will generally set a time he can see you, or he will say, “I cannot fit you in, but I can have my associate or my colleague do so.”
Although the diagnosis of PD may be apparent as soon as you walk in, the neurologist should stifle the urge to make a quick diagnosis. To begin with, the diagnosis may be incorrect, or if correct, such a quick diagnosis can be disturbing and not appreciated by you or your family. At the beginning of the disease, you and your family are probably frightened and anxious. You’ve sensed some-thing’s wrong but may have denied or dismissed the symptoms.
If a stranger, a neurologist, quickly points out the obvious, it will likely reinforce any guilt you may feel about not seeking help sooner. A recurrent theme of patients seeking another opinion is that the other neurologist “didn’t examine me or listen to me.” The neurologist must convey a caring attitude; this will help establish a trusting doctor-patient relationship.
After taking a history and doing an examination, the neurologist may order a magnetic resonance imaging (MRI) scan of your brain. An MRI-scan does not con-firm or negate the diagnosis of PD, rather it eliminates, or “rules out,” other disorders that can mimic PD. For example, an MRI scan of your brain may reveal that your difficulty walking is from a disorder called normal pressure hydrocephalus (NPH) or from multiple small strokes (Vascular Parkinson).
A neurologist may also choose to do a “levodopa test,” which involves putting you on a dose of carbidopa/ levodopa 3-4 times a day for 4-6 weeks. Patients with PD respond to levodopa, while patients with PD-like disorders respond poorly or not at all. However, I don’t do a levodopa test on patients because Parkinson dis-ease can usually be diagnosed without it and once you are started on levodopa it is hard to stop—and there are advantages to delaying levodopa.