Advice for People Newly Diagnosed with Multiple Sclerosis: Be Educated. Be Empowered. Be Hopeful.
Multiple Sclerosis Institute expert offers tips on navigating your MS diagnosis.
You were just diagnosed with multiple sclerosis (MS). The first thing to know is that you are not alone.
More than 2.3 million people are living with MS, which is an unpredictable illness. It is a demyelinating disease that affects the central nervous system, which includes the brain, spinal cord and optic nerve. When demyelination – damage to the myelin sheath that surrounds neurons – happens, nerve fiber signals are disrupted. This disruption can lead to sensory or motor symptoms including fatigue, cognitive deficits, numbness and paralysis.
Now that you have a name for your symptoms, what should you do next? First, don’t allow yourself to be overwhelmed. Instead, take baby steps. Second, find a provider who is knowledgeable about MS. MS treatments, research and understanding of immunology and epidemiology is rapidly changing, so it’s essential to have an expert on your side.
Here’s a list of things to consider as you start this journey of your new normal:
- Learn what MS is, what symptoms are possible and what treatment options are available.
- Learn the difference between a relapse and a pseudo-relapse.
- Understand there is a difference between disease management medications, relapse management medications and symptom management medications.
- Understand the role of infections and how they worsen MS symptoms.
- Use resources such as the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America websites.
Establish a Support System
- This includes your MS team – physicians, mid-level providers, therapists, neuropsychologists and case managers.
- It also includes local support groups and social media groups.
- Many pharmaceutical companies offer excellent programs that can help answer questions ranging from symptoms to treatments to insurance.
- Don’t forget about support provided by family, friends and church members.
- If you’re not moving, start moving. If you’re exercising, keep exercising. Make sure to check with your doctor before starting any kind of new exercise program.
- Remember: Exercise won’t hurt you. In fact, it helps with your overall strength and balance.
- Understand Uthoff's phenomenon – worsening of symptoms related to overheating – and its relationship to exercise.
- Get help from physical and occupational therapists to reach your goals.
- Seek out aquatic therapy, hippotherapy and wellness programs.
- This new normal may mean you have daily symptoms. Learn what you can do to minimize them.
- Manage your other medical problems to optimize your health.
- Follow your MS team's recommendations for better outcomes.
- Understand your rights as an employee to protect your job.
- Remember you have MS: MS doesn’t have you.
Everyone’s MS journey is different. No two people will have the same disease course. While it’s great to talk to other people to gain insight, it’s important to always make the right decision for you. Just because your co-worker is doing great with an injectable medication doesn’t mean it makes sense for a person who is afraid of needles. Remember: Treatment options are only good if you take them. Know who you are and what you are capable of doing.
Early in your diagnosis, spend time educating yourself. Education can calm the nerves of uncertainty. Go to support groups, attend pharmaceutical dinners and ask questions of your MS team. Remember: Knowledge is power. Even though you can’t ultimately control how MS will affect you, you can control how you will face it. Be educated. Be empowered. Be hopeful.
More information on Shepherd Center’s Andrew C. Carlos Multiple Sclerosis Institute is available here.
KIMBERLY MIECHIELS is a practicing physician assistant at the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center. She holds a master’s of medical science degree from Emory University and a bachelor’s degree from Michigan State University. She has been a board certified physician assistant since 1996. She is actively involved in the multiple sclerosis (MS) community as a respected speaker and contributing member to multiple monographs on MS. Her area of expertise is MS and rehabilitation, especially spasticity and the role it plays in disability.
Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.