Multiple sclerosis (MS) is a progressive disease that changes and worsens over time and has no cure. If you have been diagnosed with MS, you should see a neurologist , a healthcare provider who specializes in diseases and conditions that affect the nervous system, on a regular basis.
Of course, this could be the neurologist your doctor referred you to when you started having symptoms. But if, for some reason, you think this healthcare provider isn't right for you, you may be intimidated by the prospect of looking for a new one.
Key point: Take a step-by-step approach to targeting an MS care provider you think you can trust to care for you now and in the future.
Step 1: get an idea of your options
There are no MS practitioners. Neurologists approach MS patient care work from different perspectives, and some of them may have specific areas of expertise or strengths that resonate with your medical history.
There are some general differences between healthcare providers to be aware of:
One possible benefit of working with a neurologist who specializes only in multiple sclerosis is that you are likely to see more patients with multiple sclerosis than a more general practitioner, and may have experience with more variants of the disease. Additionally, the staff at such a healthcare provider may be particularly knowledgeable and will be able to answer many of your basic questions.
Some neurologists rely heavily on disease-modifying medications and are beginning to prescribe such treatments to virtually all new patients. Others take a more holistic approach and include psychological support, nutritional counseling, and physical therapy in patient care. They can even suggest and help you use complementary and alternative medicine (CAM) options, such as yoga, meditation, and more.
Many neurologists who do research on MS in academic medical centers also see patients. There are pros and cons to signing a contract with these healthcare providers. One of the advantages is that they tend to coincide with the latest treatments. On the other hand, your participation in research can make them less accessible.
Step 2. Focus on a convenient location
If you find a healthcare provider who seems to be the right fit for you, but is some distance away, it's important to consider that. Even if you're ready to go, it's wise to weigh factors like conflicting commitments, travel costs, and fatigue.
Having a remote healthcare provider can also be a disadvantage if you need immediate treatment for an outbreak of multiple sclerosis symptoms.
Step 3. Build a broad network
Armed with a general idea of the type of healthcare provider and services you are looking for, start collecting names.
Since you ultimately need a health care provider who accepts your health insurance, you can start with a list of neurologists who are on your plan and who are at your fingertips. Most operator websites have tools to help you filter your searches accordingly; alternatively, you can call customer service for assistance.
Whether or not you start with a list of neurologists on your insurance plan, good sources of advice and / or information on the healthcare providers you are considering include:
- Local or Online Multiple Sclerosis Support Groups – Interviewing participants who have been treated by a particular healthcare provider is one of the best ways to get the patient's perspective on everything from availability and wait times down to bedside manners and communication styles.
- National Multiple Sclerosis Society (NMSS): Find your local office by calling 1-800-FIGHT-MS (1-800-344-4867) or visiting the NMSS website .
- American Academy of Neurology (AAN) – This professional organization 's website may provide information on specific healthcare providers.
- PubMed – This is the National Library of Medicine's medical research database. You can search for a provider's name in PubMed by entering their last name and the first few letters followed by "multiple sclerosis" to find out what studies a particular provider is or has been involved in, if applicable.
Step 4: verify the candidates
The healthcare professional is not the only person in neurological practice that they want to influence when making a decision.
Talk to the administrator
While it is sometimes possible to schedule a doctor's appointment on the clinic's website, at least for the first appointment, it is recommended that you call the office and speak with the office manager or administrator. You will get information about the general environment and you will also be able to get answers to some of your general questions, such as the health professional and his style.
Interview with a healthcare provider.
Come to the first meeting with a prepared list of questions, including:
- How often do you want to see me?
- How do you approach treatment? Do you have a standard protocol or will you create a custom plan for me?
- Are you ready to coordinate my treatment with other specialists?
- Do you recommend or support complementary and alternative medicine ?
- How do you want us to contact you between regular and scheduled appointments?
- Do you have a nurse on call?
Feel free to ask these or any other questions; declare yourself to make sure they get a response. If this bothers you, bring in a trusted friend or family member to take notes, ask additional questions, and protect you. This person can also share their opinion of the treating physician with you after the appointment, which can be especially helpful if you are unsure whether you need a particular healthcare provider.
Preparation for receptions
Once you have chosen a healthcare provider, there are several things you can do on an ongoing basis to be an empowered patient at each visit. For starters, don't think your healthcare provider will take the initiative and tell you everything you need to know, like your latest imaging test or new symptoms.
Consider your doctor's appointments important business appointments; prepare for them. Organize your thoughts and questions ahead of time and don't think you're overdoing it – your healthcare provider will truly respect you for coming prepared and appreciate your efforts. Use the discussion guide below with your doctor to prepare for your appointment and start talking to your doctor about your condition.
Multiple Sclerosis Discussion Guide
Get our printed guide to your next doctor's appointment to help you ask the right questions.
Update your healthcare provider
Briefly describe on paper how you feel and how your MS affects you. For example, to help your healthcare provider understand your pain, a symptom that can be especially difficult to describe, write as many descriptions as possible and be very specific.
For example, don't say your back hurts, rather say, "My lower back hurts, and sometimes the pain goes through my back leg." Or, when describing the pain sensation, use words like "throbbing," "sharp," or "stabbing."
Also include any lifestyle changes you are making, such as diet changes, exercise, and nutritional supplements. Inform your doctor of any alternative therapies you receive, such as acupuncture , chiropractic , and massage.
Decide what you want to improve
Make a list of what you want to improve in your health. For example, if you tell your doctor that you have trouble sleeping, the time of day you take your medicine may change, which can make a big difference.
List any additional questions
Remember, there are no bad questions or topics, especially when it comes to taking care of your health. Something that some people may think is insignificant – for example, not being able to solve a Sunday crossword – can make a big difference to you. Likewise, unusual questions, such as the question of whether laser hair removal will cause a relapse of MS, are important to clarify, even if you may be the only one asking about it.
Prioritize your questions or concerns so that the most important things can be addressed in the event that time runs out.
Make a plan for your notes
Even during routine checkups, it can help to bring someone in to take notes and ask questions you may not be thinking about. If this person is a family member or someone who spends a lot of time with you, you can also share your observations of the progression of your multiple sclerosis with your healthcare provider.
Talk to yourself
If you have white coat syndrome, that is, are nervous about medical professionals, or are completely comfortable with a neurologist, have a positive attitude towards their methods. Remember that even if your neurologist is a medical genius, he cannot read your mind or see what happens to your symptoms outside of his office unless you tell him.
Get the word of drug information
A diagnosis of multiple sclerosis can be a difficult time for you and your loved one, and finding a neurologist to help you is the first step on this long journey. Try to take it every day and remember that you are not alone and that you can feel good again.