NAVIGATING HEALTHCARE

Tips That May Help You Find a Neurologist for MG Care

Consider what qualities are most important to you when it comes to your healthcare in an effort to help find the right neurologist.

Finding the right neurologist that may help manage your myasthenia gravis (MG) symptoms can pose certain challenges, but by understanding what qualities are most important to you when it comes to your healthcare, you may find the neurologist who meets your needs.

A neurologist is a healthcare provider who specializes in diseases and conditions that affect the nervous system. For people living with MG, having a neurologist who you trust and can lean on could be a critical piece of your MG management.

Whether you’re looking for your first neurologist, have recently relocated, or are seeking a better match for your healthcare needs, there are some key things to consider in your search.

Questions to ask when seeking out a new neurologist

Below are a few questions to consider when you begin searching for a neurologist. Of course, not every question will be applicable to your specific situation, so you might want to choose those that are most relevant to you. This may help you discover which provider qualities matter most to you.

For additional suggestions that may help you find the right neurologist and other healthcare providers, take the What to Look for in a Doctor Quiz.

Before scheduling an office visit

Consider the basics, such as:

  • Is the doctor taking new patients?
  • Does this practice offer telehealth services?
  • Is the doctor covered under your insurance?
  • Is the office within a reasonable distance to your home?
  • Do others recommend this doctor?
  • What are the office hours? Do they fit within your schedule?
  • Are same-day appointments available?
  • Is the doctor or someone within the practice available for emergencies?
  • Is the office Americans with Disabilities Act compliant?

People living with MG may want to consider looking for a physician who is a board-certified neurologist and who has experience with myasthenia gravis. For a doctor to be board certified, that means they have the highest level of accreditation within their specialty.

In some areas, there are neurologists who have subspecialty training in neuromuscular diseases, which people living with MG may find helpful.

You may want to consider the following questions when it comes to the physician’s qualifications and background:

  • Is the doctor board certified?
  • Do they specialize in MG or have experience treating MG?

Your personal preferences may also play a role in choosing a neurologist you are comfortable with and can trust.

During the visit

Once you have considered all your options and selected a neurologist who you feel may meet your MG needs and management goals, it’s a good idea to come prepared to the office visit with a list of questions, such as:

  • Can I contact you between appointments? If so, how?
  • How often should I plan to come in for visits?
  • Will you create a customized treatment plan for me or do you have a standard approach for people living with MG?
  • How many of the doctor’s current patients are living with MG?
  • Will you coordinate my management plan directly with my primary care provider?

For additional suggestions on how to help prepare for your doctor’s visit, read the Discussion Guide: Talking to Your Healthcare Team About MG.

After the office visit

Once you have met with your potential new neurologist and their office staff, you may find it helpful to journal your experience, so you have notes to look back on. While it’s still fresh in your mind or after referring to your journal, consider:

  • Did the doctor communicate in a way that was easy to understand?
  • Did you feel comfortable being open and honest?
  • Did the doctor help you to feel empowered to provide suggestions for your own care?
  • Did you feel that the doctor was listening closely?
  • Were all your questions answered thoroughly?
  • What is their approach to myasthenia gravis treatment?
  • Did you feel comfortable with their level of knowledge about MG?
  • Were the receptionist, nurses and other office staff welcoming?
  • Did you leave the office feeling heard and more satisfied compared to when you arrived?

Stephanie’s* search for a neurologist

Stephanie found out she was living with myasthenia gravis in 2015 and describes having both good and bad neurologist experiences. Stephanie’s dad was diagnosed with MG prior to her own diagnosis, so when she first started experiencing symptoms, she immediately suspected it might be MG.

Stephanie was under the care of a new primary care physician who recommended she seek further medical attention for symptoms she now knows to be MG-related because of her father’s MG diagnosis. While it’s rare and the exact link is not currently known, MG does occasionally run in families.1 The neurologist who she was then referred to, Stephanie says, was not a good match for her.

“I was unhappy with my first neurologist, but I saw that a different neurologist within the same practice (but at a different location) was someone who specialized in myasthenia gravis, so I switched to him,” Stephanie explains.

Now, my neurologist partners with me to take control of my care. I can suggest a medication or plan of action that I’ve discovered in my own research, and he responds with, ‘Okay, we will look into it together.’

Stephanie
Living with MG

When she first started the search for a new neurologist, Stephanie looked at online reviews written by patients, as well as physician profiles. “I wanted somebody who was more familiar with MG, rather than just general neurology,” she says. The first time she went to her new neurologist, she says she instantly felt more comfortable than she did at the previous office.

Stephanie shares that the first neurologist she saw “specifically told me that the management plan I was on was it and that there was nothing else they could do for me.”

“Now, my neurologist partners with me to take control of my care. I can suggest a medication or plan of action that I’ve discovered in my own research, and he responds with, ‘Okay, we will look into it together.’ So, I feel like I’m really in control,” Stephanie says.

Learning the qualities that matter most 

What Stephanie discovered in her search for the right neurologist was that she wanted to be more involved in her MG management plan. In her experience with the first neurologist, she didn’t feel like a priority and often felt unheard.

After visiting with a new neurologist, she felt more comfortable and confident in her care. Even though his office at that time was located three hours away from where she lived, she explains that “it took so long to find an office that was good for me, with dedicated office staff, and that’s really important to me, so I didn’t mind the drive. Now I’ve moved even further away, but we can do appointments remotely.”

Of course, a long commute may not be a big deal for Stephanie, but for others who are living with MG, it may be a top concern—and that’s understandable. What’s important is discovering which qualities matter most so you can pinpoint the best healthcare providers for your needs.

Reference

  1. Green JD, Barohn RJ, Bartoccion E, et al. BMJ Open. 2020;10:e037909.

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*Paid contributor to MG United.