Finding a myasthenia gravis specialist and care team
Fact-checked by Kristina Kelly, professional patient advocateWhen it comes to myasthenia gravis (MG), not all specialists are created equal. Plenty of board-certified neurologists may be able to diagnose and treat MG on paper, but understanding what separates a typical neurologist from an MG-savvy specialist is a critical step in finding the right provider to diagnose and effectively treat you.
That makes searching for the ideal MG specialists a screening job rather than sticking with the first general neurologist you find. This guide will help you with that screening.
“It took until 2017 for someone to finally start listening, 2018 to receive my diagnosis, 2019 to have my thymectomy, and 2022, when we moved to Wisconsin, to finally feel what it was like to have a care team that cared.”
— Shawna Barnes, “The burden of chronic illness life when others don’t believe you”
Who treats MG?
The answer to the question “Who treats MG?” is usually a neurologist, ideally one who subspecializes in neuromuscular medicine, often called a neuromuscular specialist. Some people may choose to be followed at an MG-focused or multidisciplinary neuromuscular clinic.
General neurology covers everything from migraine to stroke, and some neurologists may see only a handful of MG patients across a career. So even a brilliant neurologist won’t necessarily be a top-notch MG specialist.
Here’s a breakdown to help you in finding the doctor who’s right for you:
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| Who it is | What this doctor brings | When this doctor is the right fit |
|---|---|---|
| General neurologist | Broad neurology training; may see MG occasionally | If you have stable disease on a long-standing regimen, and a good working relationship |
| Neuromuscular subspecialist | Completed a fellowship in neuromuscular medicine after neurology residency; typically follows MG patients regularly | When symptoms are not well controlled, there’s an unclear diagnosis, or you’re weighing a newer therapy or thymectomy |
| MG-focused or multidisciplinary clinic | Likely a neuromuscular neurologist; plus may have on-site testing and other specialists available in one visit | If you have difficult-to-control symptoms, speech or breathing involvement, or several specialists are needed at once |
How can I find an MG specialist near me?
Start with a referral from your current neurologist or primary care doctor, then check two national directories of MG specialists:
- MGFA Partners in MG Care: This is a network of providers who have applied and been approved by a council at the Myasthenia Gravis Foundation of America. The directory covers neurology, ophthalmology, cardiothoracic surgery, psychiatry, and oncology.
- The MDA Care Center Network: More than 150 institutions across the U.S. offering multidisciplinary neuromuscular care are listed; many serve as MG treatment centers. Teams typically include neurologists, pulmonologists, speech-language pathologists, respiratory therapists, and social workers.
A search on your phone or computer for an MG specialist near me will turn up plenty of names, but referrals and directories tell you more about actual MG experience.
You may also ask for recommendations in your area or for doctors in states you’re willing to travel to see (if insurance allows out-of-state care) in MG-specific online support groups and forums, such as the Myasthenia Gravis News Forums or MG Facebook groups. There’s a key caveat, however: These tend to surface whoever posts most, not whoever treats best, and the people making recommendations may not have seen enough specialists to fairly compare their care with others’.
You can use the search tool to scan for feedback relevant to your city or state. Another option is to create a post asking for suggestions, with a query that reads something like this:
“Hello. I’m looking for a neurologist for myasthenia gravis in [insert state]. I’m specifically interested in recommendations for [insert your specific need, like seronegative diagnosis, thymectomy proficiency, ocular MG, etc.].”
What should I ask before booking an appointment?
Make a phone call, and consider an opening such as:
“Hi, I’m looking for a neurologist for myasthenia gravis. Before I book, can you tell me roughly how many myasthenia patients Dr. [Name] currently follows, and whether the doctor has a neuromuscular subspecialty? If this doctor doesn’t see MG often, is there someone in the practice who does?”
If nobody in the office can answer that, you have learned something useful anyway.
Several other questions are worth asking before you commit to a wait for an appointment:
- How many MG patients does this doctor currently follow? The current caseload may be too small for you to consider this doctor sufficiently experienced in treating MG.
- Who takes after-hours calls, and is that person familiar with MG? An on-call physician who has never managed MG may default to a general workup during an after-hours call and may not be able to adequately address your specific concerns.
- Which hospital does the doctor/clinic admit to? And if you were admitted there, would this neurologist or the group be the ones seeing you?
- Are infusions handled in-house or referred out? This affects your schedule, your travel, and often your bill.
Confirm the practice is in-network for your specific insurance plan rather than trusting either the clinic’s or your insurance’s website. If you want the first available new-patient appointment, ask whether there is a cancellation list so you could possibly get seen sooner. If you are booking at a multidisciplinary center, ask which specialties will be available during your visit.
Who else should be on my gMG care team?
Beyond a neurologist, an MG care team commonly includes a speech-language pathologist for swallowing and voice changes, a pulmonologist or respiratory therapist if breathing is involved, and a neuro-ophthalmologist for drooping eyelids and double vision. A complete care team will also include a physical therapist (PT) and/or an occupational therapist (OT), as well as a pharmacist who holds your full medication list.
Two of those deserve elaboration:
PT or OT?
Many people confuse PTs and OTs, given that both are therapists. Their areas of expertise differ, however.
While a PT designs and guides you through exercise programs that work on mobility, an OT helps you learn functional skills so you can take care of yourself independently. A PT may help you build strength, balance, and endurance without worsening your symptoms. An OT can help you learn adaptations to make tasks less fatiguing.
Ask whether the therapist has treated MG before you start, and say plainly that your weakness is fatigable.
Pharmacist
Some medications can worsen MG weakness, and the prescriber writing them often isn’t your neurologist. One pharmacist holding your full list is the person most likely to catch that before it reaches you.
For example, several widely prescribed medication classes can worsen MG weakness.
The Myasthenia Gravis Foundation publishes a cautionary drug list, approved by its medical and scientific advisory board, drawn from international consensus guidance. Print it, keep a copy with you, and hand it to any new prescriber.
None of these medications is automatically off limits, but all of them are decisions your care team should make knowingly rather than by accident.
How can I prepare for my first specialist visit?
Plan to bring five important things to your first appointment:
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| What to bring | How it helps |
|---|---|
| A two-week symptom log | Allows the doctor to get an idea of what your day-to-day looks like, and whether there are any patterns to symptom fluctuations; make sure to note both severity and time of day |
| A video of yourself at your worst | Twenty seconds of a drooping eyelid or slurred speech carries more weight than describing it afterward |
| Your past records | Lets the doctor see antibody results and EMG reports firsthand, which can be important as office-to-office transfers can fail; you can save documents as PDFs on your phone |
| Three questions, written down | Ensures you remember to ask the doctor about key concerns; fatigue and a short appointment may not survive a longer list |
| A list of every medication and supplement you take, plus their doses | Provides the doctor with a full picture of your meds, and may help flag any potential interactions; make sure to include anything over the counter |
Essential next steps
- Ask your current doctor for one name this week. A referral already in hand shortens the wait later, even if you’re not switching yet.
- Call an office and ask the caseload question. Five minutes could tell you whether booking is worth it.
- Request your records now. Having antibody results and any EMG reports as PDFs will mean you’re not relying on an office-to-office transfer.
- Start a symptom log today. Bringing data to your doctors at every appointment will help them understand your actual lived MG experience rather than relying only on hospital records.
It’s important to remember that you don’t have to stay with the first neurologist you see if you feel you aren’t getting the answers and care you deserve. Many patients will try multiple providers before they find one who is best suited for their needs. With a little extra work on the front end, you can take steps toward connecting with a trusting, helpful MG care team.
“I’ve changed care teams when I felt unheard … And every time, those changes led me somewhere better.”
— Shawna Barnes, “Independence looks different when you’re living with myasthenia gravis”
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
