Build The Rest of Your Team

Make time now to pull together the personal and medical support you need to treat MS and help you on this new path.  By putting together a great team, you will ensure that your strategy will meet your needs.  You owe it to yourself to take a little time in these first few months to get the right people engaged in your care and treatment. 

When it comes to treatment and care, there are four main areas of support:

1. Medical:

Take a fresh look at your medical team with your diagnosis and long-term needs in mind. Many MS patients go through a long journey to diagnosis.  At this stage, you may have seen several different doctors and been through many tests.  If you like your medical team and feel they have given you great care, then it should be relatively easy to move ahead with your treatment strategy. 

The basic requirements you should expect from your doctors and medical team are:

  • Respects your individual needs and is willing to work with you to define treatments and disease-management activities that meet your needs.
  • Takes time to answer your questions
  • Provides you with accurate information
  • Explains your options and the key considerations for your choices
  • Also, the American Medical Association has a Patient Bill of Rights you should review.

Be aware of any “red flags.”  These things signal you may want to consider different options:

  • Too hard to schedule
  • No time for questions
  • Questions unwelcome
  • Attitude that is unproductive or undermining
  • You are uncomfortable talking to them about your symptoms
  • Demeaning or condescending

If you feel you need to examine different options for your medical care, you can look for doctors by:

  • Calling local hospitals.  Some have physician referral centers staffed by nurses who can help match you with a doctor.
  • Looking at local publications that may publish “Best of” lists of doctors in your area by specialty/interest.
  • Asking current doctor for a referral.  If you have a doctor you really like ask them for a referral to a specialist or general physican. Doctors often have good networks.
  • Look at the TurnFirst Resource Center. [Click Here] There are people standing by to help you online, via phone, and in person.  All you have to do is ask! 
  • Checking with your local National MS Society chapter.  They can usually give you a list of all the neurologists in your area.
  • Check the Glossary of Medical Specialities for MS Care.
  • Asking your friends.  Sometimes they can point you in the right direction.

When you are considering your options, use the TurnFirst checklist to help you make your assessment: [PDF]

Additional Medical Support

1)  MS and Medical Support.  First you will need a neurologist, preferably with a MS specialty, AND a general physician who understands MS.  These two are essential. Both doctors need to know your complete medical history, including allergies and all medication you are currently taking.  Women also need to make sure they have an OBGYN who can keep them up to date on breast examines, PAP tests, etc

Start with your neurologist, the ‘captain’ of your MS medical team.  They can help you get the resources you need.  Your neurologist might have a list of providers they recommend and work with. 

2)  Physical and Disability Support. In addition to your general physician and neurologist, you may also need one of the following medical specialists during an exacerbation.  While you may not need them right now, it’s good to know they are options if you do.

  • Physical therapists. A physical therapist (PT) is a licensed healthcare professional that evaluates and treats physical dysfunction resulting from injury or disease. They can be very helpful maintaining and rebuilding muscle strength during and after an exacerbation, thereby helping patients to recover more quickly and more fully.
  • Occupational therapists are licensed healthcare professionals that evaluate and treat the self-care, work, and leisure skills that are essential for work and independent living. Occupational therapists can assist those with MS by restoring, improving, or maintaining hand functions related to daily activities.  They also can recommend assistive equipment and explain how to use it.
  • Speech Language Pathologist or Speech Therapist.  A speech therapist (known as speech language pathologist) is an individual trained to work with speech and language issues.

3)   Cognitive, Emotional and Mental Support. Sometimes the psychological challenges of dealing with a major medical issue and its ramifications on our lives can be hard to manage.  If you are struggling with these issues or feel you might suffer from depression, ask for a recommendation for a psychiatrist or psychologist that can help you talk through your problems and provide you with the proper treatment. There are three main specialists available to help you:

  • Psychiatrists are medical doctors (M.D.) that specialize in mental health.  They are able to assess patients’ needs and prescribe medications when necessary. 
  • Psychologists are medical professionals who specialize in mental health but are not medical doctors (M.D.s) and cannot prescribe medication.  They provide counseling and therapy.
  • Neuropsychologist is a psychologist with a specialization in neurology. They specialize in the study of the brain-behavior relationships and typically perform cognitive evaluations.
  • Counselor/Psychotherapist.  Therapists are trained to help with the emotional, interpersonal, and behavioral issues that confront patients.
  • Nurses, especially those trained in MS, can be tremendous resources for patients.  They can help with a spectrum of issues from the coordination of care to insurance issues.
  • Occupational Therapist.   (See above.)

Determining which mental health professional is best for you can be tricky.  Your neurologist can help you determine whether it is best to see a psychologist, neuropsychologist or psychiatrist.  Describe your symptoms to your neurologist and they will be able to make a recommendation.

A few words of advice to get started:

The Do's

  • Research the top MS specialists in your region 
  • Take the time you need to meet with your doctors and pro-actively pick your team.
  • Ask questions.

The Don'ts

  • Don’t be afraid to ask for a second opinion.  There are a number of conditions that share many of the symptoms of MS, so make sure these things have been ruled out.
  • Don’t feel like you have to work with a doctor who doesn’t give you the answers and support you need.  Your medical care has to be a partnership.  Make sure you like and respect your partners.
  • Don’t accept predictions of your future or a course of action that you believe is wrong.  In these instances, get a second opinon.  Read about "MS Myths".