Your Search for a Multiple Sclerosis Doctor
Usually people with multiple sclerosis (pre-diagnosis) get referred to a neurologist by their doctor because they are experiencing symptoms that lead another doctor to believe that they have a neurological disorder, such as multiple sclerosis (MS). When a diagnosis of multiple sclerosis is made, patients often feel very emotional and committed to the doctor that helped them figure out what was wrong, as well as overwhelmed and confused. However, this is the time to stop and think about what you want in a doctor. MS is a chronic illness, meaning you will have it for the rest of your life and have to be under a doctor’s care. You should select your neurologist carefully, as someone that will be your partner in keeping you healthy for a long, long time.
Know What you Want
Before you being your quest for a neurologist, first take a few minutes to consider what kind of neurologist you want. Here are some thoughts to get you started:
- Specialization: There are doctors that specialize only in the treatment of MS, while other neurologists treat all neurological diseases and disorders, such as stroke, Alzheimer’s disease and epilepsy. The MS specialists have seen many more patients with MS and a much broader variety of symptoms. In addition, the staff of MS Clinics can probably answer many of your questions over the phone
- Aggressiveness: Do you want your doctor to treat relapses and symptoms aggressively using medications and therapies or do you want a more conservative “wait and see” approach?
- Alternative Medicine: Are you interested in alternative and complementary medicine like nutritional changes, herbs or massage? It is important that your doctor be willing to listen to your interests.
- Research: Researchers are up-to-date on the latest treatments, but often have less time for patient interaction.
- Approach to Treatment: Some neurologists are very committed to one of the disease-modifying drugs, and will start virtually every new patient on that treatment. Others take many factors into account before making a recommendation, including side effects, administration methods and the doctor’s own experience with the drugs in patients with a similar disease course and presentation.
There are other things you may want to consider in your search for a neurologist including:
- Integration: Are you looking for a doctor who integrates psychological and physical therapy, as well as other professionals, into the treatment plan or are you willing to manage other types of care yourself?
- Location: Are you willing to drive a bit further to see a particular doctor? Keep in mind that you may have to get to your doctor during a relapse or time of symptom worsening.
Contact a Support Group
Support groups can be a great place for referrals. Once you know what you are looking for, you can talk to people at the support group and they will be happy to give you recommendations. This is the best place to get an honest appraisal of the neurologists in your area.
Call your Local MS Society
Search at the American Academy of Neurology
You can find lots of information at the American Academy of Neurology about the doctors in your area. Once you have a few names, search them to find out more about the doctors you are considering.
Search the Name in PubMed
PubMed is the National Library of Medicine’s database of medical research. Every article in almost every scientific medical journal is listed here. You can search a doctor’s name by typing in the last name and the first initial (no commas) and the words “multiple sclerosis.” This will tell you about the research studies that doctor has been involved with around MS.
Call the Drug Companies
Not all neurologists can prescribe all of the MS treatments. To make sure the doctor you are considering has experience in MS and in a variety of treatments, you can call the drug companies that make MS medications and ask for a list of prescribing doctors in your area. They may or may not give out the list, but it is worth a try. Here are some numbers:
- Avonex 1-800-456-2255
- Betaseron 1-800-788-1467
- Copaxone 1-800-887-8100
- Rebif 1-877-44-REBIF
- Novantrone 1-877-447-3243
- Tysabri 1-800-456-2255
Call Your Insurance Company
Once you have narrowed down the possibilities, you’ll want to call your insurance company to make sure they will cover your office visits and treatments. Make sure that your provider is “in network” to help save yourself money from extra charges.
Interview the Receptionist
Unfortunately, it is usually impossible to interview your doctor before making an appointment, but you can interview the receptionist. If you call at a slow time (early afternoon) the receptionist may have time to tell you a little bit about the doctor and his or her style. This may help you narrow down the possibilities further. Ask the receptionist how the doctor feels about alternative medicine, coordinating care or aggressive treatment. You may save yourself the trouble of having to switch doctors later.
Interview the Doctor
Your first appointment with a new doctor is a time to interview the doctor. You can ask about ways to contact the doctor if you need something or have questions. Is there a nurse on call? How often does he want to see you? Will he make a custom treatment plan for you? Can he help coordinate your treatment with other specialists? What does he think about alternative and complementary approaches? Do not hesitate to ask your questions. Write them down before you go in and assert yourself to make sure they all get answered.