Finding Support Outside Your MS Neurologist

Multiple sclerosis support can come from many sources, as you manage life and the different aspects of the disease. There is no one-size-fits-all approach when it comes to managing a complex condition like MS. Support can include managing flare-ups, making dietary recommendations, monitoring disease progression, and more. Let’s take a look at the healthcare professionals who make up your MS care team. 

Which Healthcare Professionals Can Help Manage my MS?

Neurologists are integral in your MS care. They are doctors who diagnose the disease, can prescribe medications to slow disease activity and progression, offer symptom management strategies, and treat relapses when necessary. 

While many people think that neurologists are the only kind of providers who treat MS. In fact, many people receive care from providers other than a neurologist. Advanced Practice Providers include: 

Nurse practitioners (NPs)

Are advanced practice registered nurses. Those who provide MS care have a special focus on neurologic disease, and MS more specifically. Some work in a neurologist’s practice, while others work independently. As of today, nurse practitioners practice independently in 27 states. They make the diagnosis, manage symptoms and relapses, prescribe medications, and provide referrals to other members of the team. 

Physician assistants (PAs)

Always work under the supervision of a physician. In MS treatment and care, PAs make diagnoses, manage symptoms and relapses, prescribe medications, and provide referrals to other specialists—just like NPs. 

Providers practicing comprehensive MS care can coordinate with others to support patients. Many people with MS rely on multiple specialists for help. These include support with symptom management, emotional and cognitive well-being, exercise and physical activity, nutritional well-being, and medication information.

The key here is that you and your care partner(s) are at the center of this team. You communicate your concerns, priorities, and questions, and make the choices that are right for you. Your healthcare team needs to know what matters to you so they can determine how best to meet your needs as a person living with MS.

Resources and Support You Can Rely On  

The primary sources for information and multiple sclerosis support include learning what you can do on your own and guided learning that comes through MS programming. 

The types of self-learning you can tap into have increased exponentially over the years. Here is a list of MS resources you can trust to provide accurate, current, unbiased information about the disease and its management: 

MS advocacy organization websites 

CanDo-MS.org – wellness information, online and in-person programming, podcasts, small-group coaching 

Nationalmssociety.org – online information and resources for people with MS and healthcare professionals 

Mymsaa.org – information, cooling vests, mobility equipment, MRI access  

MSfocus.org – free publication providing educational MS resources 

Acceleratedcure.org – find community and help drive research forward 

MSviewsandnews.org – find MS news from around the world 

Realtalkms.com – podcasts offering clear, easy-to-understand information about the latest news in MS treatment and research  

Other online resources  

International Journal of MS Care online – offers open-access articles that are free for you to read 

Specialty Pharmacies  

Did you know that specialty pharmacies like CenterWell Specialty Pharmacy can also be a great source of support? Learn about the dedicated team of pharmacists, nurses, financial assistance, and social workers that are here to support you through your treatment journey. 

Additional Resources and Support You Can Rely On  

Multiple Sclerosis Support Groups 

Multiple Sclerosis support or self-help groups come in many formats, both in-person and online. Some are more informational, while others are more social. They can offer opportunities for support, shared problem-solving, and a sense of community. It may take time to find the group that’s right for you and be sure to check with your doctor if you learn information that differs from any medical guidance you’ve received.  

Patient Education Books 

Books can serve as helpful patient education resources. Some authors share their personal stories, which may or may not be relevant to your experience, while others aim to provide objective MS information. Look for books authored by specialists—MS healthcare providers, disability specialists, travel experts, and others with special expertise to share.  

How a Specialty Pharmacy Can Contribute to Your Care and Support  

Pharmacies such as CenterWell Specialty Pharmacy specialize in filling medications for patients with complex and chronic conditions. Your insurance will dictate which specialty pharmacy you use for your medications. The support your specialty pharmacy offers may also include specially-trained care teams, who are available 24/7 to help answer questions, as well as mail-order services so patients have easier access to the medications they need.

Some facts about specialty medications: 

• They treat chronic, rare and complex disease states, such as multiple sclerosis. 

• Many require specialized storage and administration such as injections or infusions which in turn require specialized training, either for yourself or a healthcare provider.  

• Some specialty medications, also called limited distribution drugs, are only available through restricted networks and not at local pharmacies.
  

• The manufacturers of specialty medications work with a small number of pharmacies. 

• Most require on-going monitoring to ensure safety and effectiveness and check for potential side effects. 

• They can be high cost 

Specialty pharmacy team members: 

Specialty pharmacies employ many different team members to ensure patients can access and afford their medication in a timely manner.  They also provide ongoing support, even after the medication has been delivered. The pharmacy team members include: 

• Pharmacists 

• Technicians 

• Nurses 

• Financial associates 

• Social workers 

The steps involved in the specialty pharmacy process:

1. Pharmacy technicians will give patients a welcome call to introduce themselves, answer questions about the filling process, and set expectations about when the prescription will be ready. 
2. The pharmacy team will work on processing the prescription by making sure it is approved by insurance and is affordable, as well as checking to see if safe, lower-cost alternatives are available.  
3. Once the medication is approved and deemed affordable, the technician will call the patient to set up delivery. Medications can be sent to the patient or caregiver’s house, the physician’s office, or infusion suite. 

Additional services provided by specialty pharmacies:

Financial Assistance 

If the medication copay is high, the pharmacy team evaluates financial assistance options available to determine how to make the copay more affordable. These include: 

• Medication copay cards 

• Manufacturer patient assistance programs 

• Grants 

• Low-income subsidy  

Once an appropriate option is identified, the pharmacy team will apply the assistance to the copay, resulting in little to no cost at all. 

Learn more about managing the high cost of MS treatment.  

Clinical Services 

• Before you start on a medication, pharmacists ensure the medication is safe and accurate. The pharmacist updates and reviews your medication list to confirm if any of your existing drugs or pre-existing medical conditions could interact with your medications. 

• Clinical pharmacists and nurses review everything you need to know about your medications. This includes education on how the medication works, how it is taken, injection training, expected outcomes, drug or food interactions, side effects and when to seek medical attention. 

• Specialty pharmacies also offer ongoing support. Clinical pharmacists and nurses will call patients to provide side effect management, adherence assessment and answer any questions patients may have about their medications. If patients request additional needs for assistance, a referral is made to the pharmacy’s social worker. 

 Personal Social Worker 

• Uncover determinants of health such as: transportation, mental health, food insecurity, housing, relationships, and caregiver fatigue 

• Provide local and national resources for MS education 

• Recommendations for support groups and counseling 

• Caregiver support

While managing life with MS can be challenging, familiarizing yourself with available resources can make the journey more manageable. From your healthcare team to MS advocacy organizations, online resources, and specialty pharmacies, you have many sources of support in your corner.