- Multiple Sclerosis Research Center
- Specialists to See for Diagnosis
- Diagnostic tools your neurologist will use
- How to Find a Neurologist Who Treats Multiple Sclerosis
- Questions to Ask Your Prospective Neurologist
- Communicating With Your MS Doctor
- Where to Start Your Search for an MS Doctor
Multiple Sclerosis Research Center
- Neurologists specializing in the care of MS patients: Dr. Jai Perumal, Dr. Uli Kaunzner, Dr. Nancy Nealon and Dr. Susan Gauthier, Dr. Frank Petito, and Dr. Timothy Vartanian
- Neuro-Ophthalmology: Dr. Marc Dinkin
- Urology: Dr. Alexis E. Te, Dr. Steven A. Kaplan, and Dr. David R. Staskin
- Neuro-radiology: Dr. Linda Anne Heier and Dr. Robert David Zimmerman
- Nurse Practitioner
- Clinical Social Work
- Rehabilitation Medicine
- Physical and Occupational Therapy
- Nutrition, Psychiatry and Psychology
What is multiple sclerosis?
Defined clinically, multiple sclerosis (MS) is a disease of the central nervous system identifiably by progressive symptoms, and pathologically by scattered areas of inflammation and demyelination affecting the brain, spinal cord and optic nerves. Generally, individuals note the first signs between the ages of 15 and 50. Affected patients encounter bouts of inflammatory demyelination producing the classic course of the disease of exacerbation – remittance. Diagnosis is aided by laboratory tests and the use of imaging procedures such as Magnetic Resonance Imaging.
For the first time in medical history, we’re able to control the disease, limit the frequency and severity of attacks, and limit the neurologic disability that would otherwise accumulate over time. The MS Center is dedicated to providing comprehensive patient care, performing basic cellular and molecular research on the cause of MS, and instituting novel treatment protocols for multiple sclerosis based on our most current understanding of the disease pathogenesis.
With the generous gift from the Feil Family Foundation, the Multiple Sclerosis Center, as of April 15, 2007 will be located in the new Weill Greenburg Ambulatory Care Center at the Cornell Medical Center. The Weill Greenberg Center was designed by Polshek Partnership Architects and Ballinger, a 140-person firm known for architectural excellence and innovative design, and in December 2006, the Weill Greenberg Center was featured in New York Construction’s Best of 2006 Awards issue, receiving an Award of Merit in the Health Care and Hospital category.
With views over the courtyard to the south adding to the relaxing feel of the comfortable, inviting reception area, the Judith Jaffe Multiple Sclerosis Center will consist of patient examination rooms; doctors’ offices; an infusion room; and a support suite for nurse practitioners, a social worker, clinical trials coordinator and compliance coordinator.
Clinical Trials and Therapeutics in Multiple Sclerosis
The Judith Jaffe Multiple Sclerosis Clinical Care and Research Center has an active clinical research program with long history of participating in a number of currently FDA approved therapies for MS.
We are participating in the phase III study of fingolimod for the treatment of relapsing-remitting MS. MS is widely regarded as a chronic autoimmune disorder and is thought to be primarily mediated by T lymphocytes. Fingolimod is a novel, oral agent currently in clinical development through Novartis for the treatment of MS. Fingolimod decreases the ability of both B and T lymphocytes to exit from the lymph nodes. A phase II study in patients with relapsing MS, 281 patients was randomized to receive 1.25 mg fingolimod, 5 mg fingolimod or placebo for up to 6 months. The study demonstrated highly statistically significant effects of both doses relative to placebo on both MRI and clinical relapse-related endpoints.
The current study is a phase III 24-month double-blind, randomized, multicenter, placebo-controlled, study comparing the efficacy and safety of 0.5 mg and 1.25 mg fingolimod (FTY720) administered orally once daily versus placebo in patients with relapsing-remitting MS.
To be eligible:
- You must have the diagnosis of relapsing remitting MS.
- 18 through 55 years of age
- A relapsing-remitting course of MS with at least 1 documented relapse during the previous year or 2 documented relapses during the previous 2 years
- Expanded Disability Status Scale (EDSS) score of 0-5.5 inclusive
- Patients must decline initiation or continuation of treatment with available disease modifying drugs (interferon beta or glatiramir acetate) for multiple sclerosis.
- Patients must be stop interferon beta or glatiramer acetate 3 months prior to enrollment
The Judith Jaffe Multiple Sclerosis Clinical care and research center continues to work closely with physicians from the adjoining Rockefeller University to promote basic and clinical research in this area. Close collaborations are also maintained with the leading neurology and immunology laboratories at the Memorial Sloan-Kettering Institute and the Hospital for Special Surgery; all institutions together comprising one of the largest and most advanced biomedical complexes in the world. The NewYork-Presbyterian Hospital Network of several local hospitals and an affiliation with The North Shore University Hospital on Long Island further extends the breadth of potential patient contact. In addition to the complete inpatient and outpatient neurorehabilitation program at The New York Hospital, The Burke Rehabilitation Center in White Plains provides a pastoral setting for intensive physical, occupational, cognitive, and speech therapy, working closely with the MS Center.
Specialists to See for Diagnosis
As an MS patient, you will work with a neurologist, a doctor who specializes in diagnosing and caring for people with disorders of the nervous system, to find out if you have MS and to determine the best management strategy for your course of the disease. A neurologist is specially trained to evaluate different areas of evidence to arrive at a diagnosis of MS. However, in certain cases, it can take time to determine whether you have the disease because a diagnosis requires evidence of multiple attacks/exacerbations or evidence of a steady progression of neurologic damage.
Diagnostic tools your neurologist will use
A diagnosis of MS is called a clinical diagnosis because it requires evidence that your neurologist gathers from your medical history, your present symptoms, results from a thorough neurologic examination, as well as findings from other special tests including magnetic resonance imaging (MRI), evoked potentials, and cerebrospinal fluid (CSF) analysis. Among different medical specialties, only neurologists are trained to gather and evaluate these different threads of evidence. As an MS patient, it is important to find a neurologist who has additional training and expertise in treating MS.
Medical history. Most likely you are initially referred to a neurologist because you have experienced symptoms that suggest something may be going wrong with your CNS. The first thing your neurologist will do is to take a thorough medical history. He or she will ask you to bring your complete medical records and the results from any relevant tests that you have had taken. Your neurologist will inquire about the symptoms that you’ve recently experienced, as well as symptoms that you experienced in the past. Additionally, he or she will ask about your general health, your family history of health problems, and where you’ve traveled recently, as well as lifestyle issues, such as whether you smoke, drink alcohol, or use recreational drugs. All of the questions and data that are part of the medical history will allow your neurologist to piece together the puzzle of what may be going on inside your body.
Neurologic exam. The next important step will be a thorough neurologic examination. Your neurologist is specially trained to evaluate your neurologic function and will use different techniques to assess how well your nerves function. He or she will assess your cranial nerves, including optic nerves. The nerves that control major muscles will be assessed during walking tests and strength tests requiring you to push against resistance. Additionally, your neurologist will test your reflexes and ability to feel sensations in different areas of your body. All of the individual parts of the neurologic exam will give the neurologist a picture of the health and function of your central nervous system.
Medical tests. Finally, your neurologist will use a number of different medical tests to look for signs of neurologic problems. These may include magnetic resonance imaging (MRI) and/or a series of neurologic tests called evoked potentials that measure the response of the CNS when different nerve pathways, including the visual, auditory, and sensory pathways, are stimulated. Your neurologist may also use a procedure called a lumbar puncture to take a sample of cerebrospinal fluid (CSF) for analysis to detect evidence of MS. Further tests may include blood work to look for other possible causes of your symptoms.
How to Find a Neurologist Who Treats Multiple Sclerosis
Successful management of multiple sclerosis (MS) often requires a team of medical professionals, and that team should include a neurologist.
“MS is a chronic illness that affects the central nervous system, and so it’s important to have someone who has knowledge of the pathophysiology of MS, the consequences and outcome of MS, and the new profile of treatment for MS,” says Aliza Ben-Zacharia, a nurse practitioner and an assistant professor of neurology at Mount Sinai Hospital in New York City.
“MS is not a temporary disease,” Ben-Zacharia says. “You need to have follow-up with the neurologist for the rest of your life. It’s important that the neurologist fits your life and properly communicates with you.”
You may need to meet with several neurologists to find someone who matches your individual needs.
“When I was first diagnosed with MS, the doctor handed me a piece of paper with options for different medications and told me to pick one,” says Michael Weiss, who was diagnosed with MS in 2004. “Then he left the room.”
Weiss continued searching until he found a doctor who took the time to get to know him.
“She spent two hours with me on my first visit,” Weiss says. “She asked me about my lifestyle, my kids, and my work. She was able to get a much better idea of the medications work best for my needs.”
As a result, Weiss has been able to manage his MS symptoms well and lead an active life.
RELATED: Who’s Who on Your MS Management Team?
Questions to Ask Your Prospective Neurologist
Setting up a consultation to meet and interview a physician and staff is a good way to get a sense of whether you can trust and rely on a particular doctor throughout the course of your MS treatment.
“The needs of multiple sclerosis patients vary widely,” says Adrienne Boissy, MD, chief experience officer at the Cleveland Clinic in Ohio. Dr. Boissy suggests asking prospective neurologists the following questions:
- Are you fellowship-trained in multiple sclerosis? Fellowships require one to three years of additional study in the area of multiple sclerosis. Neurologists who complete such programs are generally more attuned to the needs of an MS patient.
- How much of your time is spent seeing MS patients versus general neurology patients? Although the answer to this question will vary depending on the practice, it’s a good sign if the majority of the doctor’s patients have MS.
- Are you engaged in any clinical trials related to MS? Clinical trials can give people with multiple sclerosis access to newer, potentially beneficial therapies. While not all neurologists run clinical trials themselves, they may be active in helping their patients enroll in trials for which they’re eligible.
- How many of your patients are currently on new MS therapies? This gives you an idea of whether the doctor is keeping up with new MS treatments. It may also tell you how aggressive or conservative the doctor is with regard to experimental treatment.
- Does your office offer infusions? Some MS drugs, including the steroids used to treat MS relapses, are delivered intravenously (directly into a vein). Traditionally, infusions are administered in hospitals, so in-office infusions could save you a trip to a hospital or other facility.
- Are you comfortable integrating alternative therapies into an MS treatment plan? If you think you might want to explore alternative treatments for MS, you’ll want to be sure that your doctor is open to considering the options with you.
RELATED: Who Is Getting Highly Effective MS Treatments? And When?
Communicating With Your MS Doctor
Along with receiving proper medical care, developing a working relationship with your doctor is an important part of your MS treatment.
“Your doctor should make you feel cared for and listened to,” Boissy says. “If you don’t feel a connection, move on.”
You should feel comfortable telling your physician your goals for treatment, asking for an explanation if you don’t understand a particular term or instruction, and asking how long you should expect to wait for test results.
Pay attention to the nuances, adds Ben-Zacharia. “Do they look you in the eye? Do they listen to you? Are they answering your questions fully, or do you feel rushed?”
You should also feel comfortable about getting a second opinion if you want one. If you ever feel as though you and your physician are simply not compatible, don’t be afraid to make a switch. Your health and happiness are what’s most important.
RELATED: Shared Decision-Making for MS Treatment
Where to Start Your Search for an MS Doctor
When you’re ready to start looking for a neurologist who specializes in multiple sclerosis, begin by asking your primary care physician for referrals. You can also contact a multiple sclerosis support group to get recommendations from other people being treated for MS.
In addition, you might use the “Find a Neurologist” tools at the sites of the American Academy of Neurologists and the National Multiple Sclerosis Society.
Medical expertise is important, but communication skills are, too. As Boissy says, “You also have to trust your gut” when deciding whether a particular neurologist is a good fit for you.
Additional reporting by Susan Jara.