NAVIGATING HEALTHCARE

Building a Myasthenia Gravis Care Team Suited to Your Needs

Your MG care team can be more than just a neurologist. Learn who else you can add to the mix.

There are plenty of resources to help build a myasthenia gravis (MG) care team, but it can be daunting figuring out where to start—or whom to search for beyond a neurologist. The important thing to remember is that your management of myasthenia gravis should be unique to your circumstances, as there is no one-size-fits-all approach.1

Just ask Niki,* a mother of three who has been living with MG for 20 years and has worked hard to forge her own MG management path. Those two decades have taught her a lot about this rare disease, including who can best support her through it. Her nurse practitioner Ashley has been one of those people and happens to live with MG herself. With Ashley’s years of working within neurology, she recognized her own MG symptoms relatively quickly and was in a helpful position to support others with the disease.

The search for MG care team members may be a challenge for many, but there are several options and resources to help along the way. As an MG support group leader and active participant in the Myasthenia Gravis Holistic Society, Niki said this topic often comes up in conversation. From neurologists to physical therapists to registered dietitians, there are plenty of roles you may wish to seek for your team—and their ability to collaborate with each other can be important as well.

Fill out your own contact card to list members of your MG care team in one place.

Building a Care Team that Works Well Together

Self-advocacy can be significant in developing your care team. It can help you communicate your needs not only so you can work well with the team, but so they can work successfully together. Using a doctor discussion guide can be a great tool to help organize your thoughts in these scenarios.

As a patient, you need to advocate for yourself and ask questions.

Niki
Living with MG

Ashley, who has worked with Niki since 2019, said she works closely with Niki’s OB-GYN and primary care provider, and even referred her to a physical therapist. She also noted that “having the same go-to care team members who are familiar with MG is ideal for patients.” When it comes to speaking up to help facilitate care team collaboration, Niki cited a time when she brought concerns to her OB-GYN, keeping in mind there can be complications with MG and pregnancy.1 As a result, Niki got a consultation with an anesthesiologist to make sure they were aware of her MG.

“As a patient, you need to advocate for yourself and ask questions,” Niki explained. “Your doctor may not have the answer, but they may steer you in the direction of a doctor who will have the answer.”

Finding a Neurologist for Your Myasthenia Gravis

Since MG is an autoimmune disease that affects communication between the nerves and muscles, a neurologist is often the first and primary MG care team member to assess it.2,3 Neurologists are healthcare providers who focus on the nervous system, so they can help you track your myasthenia gravis symptoms and progress.

Before moving forward with one, it’s important to understand what qualities in a doctor matter to you, since they’re different for everyone. Consider taking this quiz to help identify your priorities when it comes to selecting a healthcare provider, or try reviewing this article of tips to help think through these ideas further.

If you’re still not quite sure what you’re looking for in a neurologist or whether the one you’ve found is the right fit, think about factors like proximity to your home (long commutes to the doctor may be off-putting or tiring), willingness to partner with you on your treatment plan, how easily they can be contacted and their communication style during appointments.

Understanding what you need, as well as knowing the different specialties and when to call on them, is important.

Ashley
Nurse practitioner living with MG

Additional Experts to Consider for Your Care Team

A meaningful rapport with your neurologist can be a great first step in building your MG care team. Once you’re feeling comfortable in that realm, it may be time to think about adding more members to your team who can support you in other areas. In Ashley’s experience working primarily with neurology patients, she noted that not everyone will need the same care team members. “Understanding what you need, as well as knowing the different specialties and when to call on them, is important,” she explained.

Below are just some of the roles that could provide value to your MG management plan in different ways.

Physical and Occupational Therapists

They have some similarities, but physical therapists (PTs) and occupational therapists (OTs) can each provide unique benefits.1 An occupational therapist may help you refine your performance of routine activities, while a physical therapist tends to focus on your body movements specifically. These tips directly from PTs and OTs can help you prepare for appointments with them.

Mental Health Support

If you or your loved one experience any signs of depression, it’s important to contact your care team as soon as possible. If you experience thoughts of suicide, please call the National Suicide Prevention Lifeline at 800-273-8255.

Mental health experts may also be good additions to an MG care team. Navigating the emotions that come with an MG diagnosis can be troubling, so a professional psychologist or therapist could be an effective line of support.4

If you’re struggling with MG mentally but haven’t found a therapist (or aren’t feeling ready for one), support groups can also be a useful place to turn.1 Niki explained that her support groups, while not equivalent to a mental health counselor, offer her help in coping with the emotional burdens of myasthenia gravis. “Whether it’s an established support group or just friends with MG, these are people who understand what you’re going through and can empathize with you,” she said. Another potential benefit of a support group is the recommendations you could get for local MG care team members that you may not have even considered yet.

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Nurse Practitioners

Like Niki and Ashley, people living with MG can have a close working relationship with a nurse practitioner, especially one that focuses on neurology. And that rapport can be mutually beneficial; as Ashley noted, she’s gained some learnings of her own along the way. “At times, I think Niki has taught me more than I teach her,” she shared. In addition to simply being a line of support, nurse practitioners may help identify treatments that can make sense for your needs, assess symptoms and recognize when there’s a need for other care team member referrals throughout your journey.

 

Eye Doctors

With eye problems being a common challenge for those living with MG, finding an eye doctor who can properly assist in this area may be a priority.1 Double vision in particular is reported as the initial symptom for two-thirds of people with MG, so even considering a neuro-ophthalmologist specifically could benefit your MG management plan.1

 

Dentists

Dentists, of course, do not provide MG-specific care—but you may wish to consider finding one that does take the disease into account. Some dentists might modify treatments to accommodate MG muscle weaknesses, for example.1 These are the sorts of recommendations that may come up in a support group discussion, according to Niki.

 

Registered Dietitians

Chewing and swallowing may be difficult for some people living with MG, so any way to ease mealtime might be appreciated.1 In addition to incorporating MG-friendly recipes into your routine, working with a registered dietitian could be valuable. Niki noted that working with a professional helped her identify alternative diet plans to support her lifestyle goals, for instance.

Every MG Care Team Is Unique

Rounding out your MG care team with any of these roles may help your overall approach to living with MG. A great way to find recommendations for care team members may be to check out resources from national organizations. According to Ashley, people living with MG should do their best to understand the personal course of their MG as they shape their care team. “Stay educated, ask questions and take notes to refer back to,” she said. “Don’t overwhelm yourself.”

Remember there are many potential roles, outside the ones mentioned in this article, that can make up an MG care team—many types of supporters could make sense for you at various points in your journey. Since your MG care team can involve several different members, consider downloading the contact card below to house all their information in one place.

Get your own contact card to list all your MG care team members in one place.

  1. Howard JF. Myasthenia Gravis: A Manual for the Health Care Provider. 1st ed. New York, NY: Myasthenia Gravis Foundation of America; 2009.
  2. Gilhus NE, et al. Nat Rev Neurol. 2016;12(5):259-268.
  3. Myasthenia Gravis – Diagnosis & Treatment. Mayo Clinic website. Updated June 22, 2021. Accessed July 1, 2022. https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/diagnosis-treatment/drc-20352040
  4. Coping with a diagnosis of chronic illness. American Psychological Association website. Updated 2013. Accessed April 6, 2022. https://www.apa.org/topics/chronic-illness/coping-diagnosis

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