3 reasons to break up with your myasthenia gravis doctor

Last updated Oct. 23, 2025, by Mary Chapman

Having the right myasthenia gravis (MG) doctor is key to managing the disease and your quality of life.

A knowledgeable and proactive MG neurologist can guide you through personalized treatment and ongoing care. They can educate you about symptom triggers, potential complications, and self-management strategies. And they should help coordinate a multidisciplinary team to ensure all aspects of the neuromuscular disease, such as weakness and fatigue, are being addressed.

Your relationship with your MG doctor is key to maintaining your health and well-being, so there may be times when you are considering changing your MG neurologist.

The Myasthenia Gravis Foundation of America has resources that can help you find MG specialists.

What to look for in an MG doctor

MG symptoms and severity can vary widely, such as fluctuating or sudden worsening muscle weakness. Fatigue and difficulties with vision, mobility, breathing, and speech can greatly affect daily life.

It’s important that you have a doctor you trust and who is the right fit.

Before changing your MG neurologist, you should:

• make sure your new neurologist has expertise and experience in treating the complex disorder
• establish clear communication with any potential new doctor about current symptoms, treatments, symptom triggers, medication, and response to therapy
• prepare a thorough medical history and list of all medications, symptoms, and concerns to ensure a smooth care transition
• avoid a care gap, especially since you’re at risk for a flare or crisis, by waiting to leave your current MG doctor until you’ve established a relationship with a new one
• take into account delays in booking an appointment with a new doctor, which may be affected by factors such as location and specialist availability

If you are questioning your current care plan but aren’t ready to make a change, you may want to get a second opinion. It doesn’t commit you to switching doctors, but it may give you peace of mind.

When to consider getting a new MG specialist

There are many reasons someone with MG might want to consider changing their MG doctor. Three columnists from Myasthenia Gravis News share their experiences with their MG care and reasons for possibly making a change.

Not up to date on treatments

Shawna Barnes, who was diagnosed with seronegative generalized myasthenia gravis (gMG) in 2018 after experiencing eye droopiness, ended up quitting an MG specialist who wasn’t able to stay up to date with research and treatment options.

Barnes, 41, has been with her most recent neurologist for three years. While he’s a three-hour drive away from her home in Cable, Wisconsin, she feels confident and comfortable in his care.

“Thankfully, the neurologist at the Minneapolis VA is very familiar with MG and current protocols,” Barnes says. “It is because of him that my MG has stabilized.”

Barnes says you should think about changing doctors if your concerns are ignored, you “don’t feel heard” when discussing symptom severity, or if potential side effects of a treatment aren’t explained ahead of time.

Ignores or dismisses symptom concerns

After a decade of searching for answers, Sarah Bendiff was diagnosed with gMG in 2018. Since then, the 26-year-old Algerian resident says she’s dropped several MG specialists and currently doesn’t have a doctor.

The first time she left a doctor was because she felt she wasn’t being listened to.

“Because I was younger and had different symptoms than the typical MG patient, the first doctor took me seriously, but kept reminding me not to focus on each symptom individually,” she says. “And it’s still ongoing. I drop every time because they minimize my symptoms. My main problem was — and still is — air hunger. When I get tired, I can’t breathe. That doctor didn’t even take the time to explore it, so I switched.”

Whenever she sees a new doctor, she says, they want to stick with the acetylcholinesterase inhibitor she was initially prescribed. They tell her she’s too young for other treatments.

“Too young for what? Medical experimentation? Or for simply wanting to breathe?” Bendiff wonders. “Because since MG started, it has never considered me ‘too young.’ It keeps hitting me with symptoms regardless.”

While MG can be diagnosed at any age, symptoms usually begin in adulthood. Bendiff’s symptoms started when she was 9.

“I’ve never had a doctor take me under their care and say, ‘Even if I don’t have all the answers, I see you. I understand your struggle.’ And because of that, even after 17 years of living with MG, I still haven’t found someone I would proudly call my doctor,” Bendiff explains. “I keep switching, constantly craving care like a child abandoned by their parents. And honestly, I’ve lost hope that it will ever change.”

Doesn’t involve you in your care or seems impatient

Jodi Enders, who is a forum moderator for Myasthenia Gravis News, was diagnosed in 2020 with gMG. She’s never changed her MG doctor, but only because she went into remission first.

“I think there were reasons I should have switched, so I don’t suggest following my path,” says Enders, 26, who lives in Fort Myers, Florida. “MG doctors are hard to come by, which can make people hesitant to change.”

She recommends considering someone new if your neurologist makes treatment recommendations without asking for your input.

“Your doctor should present all treatment options,” Enders says, “with pros and cons, and allow you to make the final call.”

If you don’t feel your doctor has the knowledge or experience to guide you, or if they rely only on general internet research instead of clinical expertise, Enders says that it may be time to move on.

“MG isn’t always the sole focus of a neurologist,” she notes. “It’s reasonable that they don’t know every rare case or side effect. But they should be willing to research and consult when needed.”

Those with MG should show investment in your care, Enders adds. They should thoroughly discuss test results with you, and quickly respond to messages.

“A doctor who seems rushed, uninterested, or unwilling to learn about MG is not a supportive doctor,” she says.

She also believes that not feeling heard or supported is reason enough to switch doctors. Ultimately, Enders says, trust your instincts.

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.