4 Unexpected Challenges of MS and Tips to Overcome Them

When you talk to your doctor, your friends, or your family about MS, the first thing you probably mention is your physical symptoms. Fatigue, spasticity, and brain fog are some of the expected challenges of living with multiple sclerosis.

However, life with this chronic illness also comes with some hidden challenges—things you may not expect or feel ready to handle. Here are four of these unexpected challenges and a few tips to help you work through them.

1. Taking a disease modifying therapy

Disease modifying therapies (DMTs) are medications to help put the brakes on your MS. They can limit new symptoms and new disease activity. It is up to you and your healthcare team, together, to decide which DMT works for your lifestyle.

If you’re someone who, at a time in your life, would take no more than the occasional over-the-counter medicine, then the thought of a medication that you need indefinitely might be overwhelming. The best place to start is learning about different DMTs.

Tips for DMT decision-making:

• Take a little time to learn about MS and DMTs. With over 20 FDA-approved DMTs for MS available, the decision-making process can be overwhelming, our DMT topic guide is here to help.
• Talk to your doctor. Here are some suggested questions about MS DMTs to ask your MS provider. Be sure you feel you have answers to all your questions before making a treatment choice.
  • What should I expect the DMT will do for my MS?
  • How do I know the DMT is working?
  • What are the side effects, and what can be done about them?
  • What are the risks, and what can be done to prevent them?
  • Are there any effects on pregnancy or breastfeeding?
  • Will I be on the DMT the rest of my life?
  • How is this DMT administered?
  • What is the plan if the side effects are too much to manage or the DMT does not work as well as hoped?
• Additional helpful resources are the Multiple Sclerosis Association’s Shared Decision Making Tool or the MS Foundation’s article How Do I Decide?
• Once you have started your DMT, there are specialty pharmacies that can offer additional support for your treatment therapy. At CenterWell Specialty Pharmacy™, they have a team of knowledgeable nursing and pharmacy staff who are trained specifically in the care of individuals with MS. They can explain dosages, flag interactions, and answer your questions, including how to administer various medications.

2. Understanding costs of MS medications

MS DMTs are often expensive. Once you and your healthcare provider decide on the DMT for you, your insurance company will need to approve it. Insurance companies have lists of medications (formularies) for which they will pay. Your DMT may be provided to you by a specialty pharmacy that deals with medications that your local pharmacy may not carry or require special handling. Specialty pharmacies have many services to help you with your health, medication, and associated costs.

Tips for medication costs:

• Know that your MS DMT will need to be approved by your insurance company before you are able to start taking it.
• Most of the companies that make MS medications have assistance programs to help lower your costs. There are criteria for assistance, but a phone call with your specialty pharmacy or directly to the maker of your prescribed DMT can offer advice on what financial assistance is available for you.
• The rules for assistance programs are different if you have Medicare insurance. The drug company, Medicare, and a specialty pharmacy can help you understand what assistance is available if you have Medicare.
• Talk to professionals at a specialty pharmacy like CenterWell™ to identify a variety of different resources that may be available to help with the cost of your medications. Their financial specialists work on your behalf to find the funding source that is right for you and can assist you in the application process.

3. Navigating health insurance

Deductibles, copays, co-insurance, formularies, tiers for drug costs, prior authorization … health insurance involves a new language and complex systems. Learning how to navigate it all will help you be an empowered decision-maker in your healthcare.

Tips to help you navigate health insurance:

• For detailed information about breaking down your benefits and navigating the complexities of health insurance, check out this podcast.
• Try this useful resource for learning insurance lingo from the Centers for Medicare & Medicaid Services.
• Speak up! Many insurance companies and specialty pharmacies like CenterWell can help you navigate the complexities of health insurance. Often the healthcare insurance website or your specialty pharmacy website will have helpful information about your coverage and what it all means. There may be nurses or other representatives that can answer your questions.
• The National MS Society has MS Navigators who can also help you learn about health insurance.
• Try to have patience—there is a lot to learn about the world of health insurance. You may spend some time on the phone, and it may be frustrating at times. Have your insurance information (plan name, member number, group number) in front of you and your questions ready when you call.

4. Working through your emotions

MS already requires so much resilience to handle the symptoms and changes they cause in your life. Sometimes, the stresses of DMT decisions, insurance conversations, or financial management can feel like the last straw.

It’s OK to seek out support to help you handle the stress, grief, or anxiety and its impact on your life. Nothing about MS is easy, and it’s important that you know your feelings are valid and there are plenty of resources to help you get through them.

Tips for managing the stresses of MS:

• Experiencing many different emotions in your MS journey is completely normal. It takes time for the emotional rollercoaster to settle down, and how long it takes is different for every person. But, if the feelings that you are having are ongoing (more than a few weeks) or interfering with your daily activities, consider contacting your MS provider or primary care physician. They can talk to you about your feelings and can make a referral to a mental health provider.
• Your health insurance carrier will probably have a list of mental health providers who are considered “in network” and therefore covered by the insurance. Contacting your insurance company can provide you with information about your share of the cost.
• There are several online directories that can also help you find a mental health provider:
  • Online Therapy
  • Psychology Today Therapy Directory
  • National MS Society
  • Mental Health America
• Sometimes the greatest comfort and eye-opening advice can come from your peers who are also living with multiple sclerosis. Every month Can Do MS offers a wide array of programming on topics from mental health and cognition to mobility and exercise. Join a program to ask questions of leading MS healthcare providers and find the support from the MS community you need.

MS is a lifelong journey, but it doesn’t need to define your life. Being prepared, proactive, and seeking support from the wealth of resources at your fingertips will help you overcome many of the unexpected challenges of MS