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Top 3 Myasthenia Gravis Questions To Ask Your Neurologist (VIDEO)

Written by Alison Channon
Posted on June 28, 2024

3 Questions You Should Ask Your Doctor About MG

Dr. Sami Saba, a neurologist and neuromuscular specialist, shares three questions he thinks everyone with myasthenia gravis should ask their doctor.

Transcript

00:00:00:00 - 00:00:25:02
Dr. Sami Saba
I’ve had people come to me who’ve had the disease for many years and still had significant symptoms or has side effects from their treatments. One of the questions people with myasthenia gravis should ask their doctors about their treatment is: What are the side effects I might expect with this treatment? The treatment of myasthenia always involves balancing risks and benefits.

00:00:25:04 - 00:00:49:13
Dr. Sami Saba
Because myasthenia gravis is an autoimmune disease and most of the treatments that are used for it are going to suppress your immune system, there is a risk of having increased rate of infections with most of the medications that are used. Another question that people with myasthenia should ask their doctors is: Are the side effects of this treatment worth the beneficial effects that I’m receiving from it?

00:00:49:15 - 00:01:18:08
Dr. Sami Saba
All of the medications that are used to treat myasthenia do have potential side effects, but the benefits of the medication, namely decreasing the symptoms of the disease, also have to be taken into effect, and when someone has very severe disease, then you may be more tolerant of a higher risk of side effects, whereas if someone has more mild disease, then you wouldn’t really want to use a medication that has a higher risk of side effects.

00:01:18:10 - 00:01:40:15
Dr. Sami Saba
So it’s always a balance of risks and benefits when you’re talking about medications for myasthenia. Another question is: Am I a candidate for a thymectomy or a surgical removal of the thymus gland? It’s pretty clear, and there’s a pretty good consensus, that people with myasthenia who are over 60 or so do not benefit from thymectomy,

00:01:40:17 - 00:02:05:13
Dr. Sami Saba
but when I have a young patient under 60 years old whose symptoms started within two or three years, I usually will recommend that they have the surgery to remove their thymus because the chance that they go into a medication-free remission in the future is higher. For people newly diagnosed with myasthenia gravis, I would tell them not to worry that there are many different treatment options for this disease.

00:02:05:13 - 00:02:27:14
Dr. Sami Saba
It’s a very treatable disease. It may take some time. It often takes some tinkering with medications and some adjustments in your day-to-day life and schedule, but eventually you’ll get to a place where you’re able to do almost everything that you want to do and that you were able to do before.

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If you have myasthenia gravis (MG), you might have questions about your treatment options. MGteam members frequently ask each other about their experiences with certain treatments. One member asked, “What treatments help you the most so far to relieve fatigue and muscle weakness?”

MGTeam spoke with Dr. Sami Saba, a neurologist and neuromuscular specialist in New York City, to learn three questions he thinks everyone with myasthenia gravis should ask their doctor.

Here are the three questions he recommends you ask the next time you speak with your MG specialist, if you haven’t already.

1. What Side Effects Are Possible With This Treatment?

Regardless of the treatment approach your doctor recommends, it’s important to discuss potential side effects. Dr. Saba emphasized that people should ask about short-term and long-term side effects. He noted, “There is a risk of having an increased rate of infections with most of the medications that are used.”

MGteam members frequently discuss their side effects. One member wrote about their current treatment, “The side effects are diarrhea and stomach discomfort, but overall, the medication really helped me a lot. The doctor also gave me a pill to help me with the diarrhea.”

2. Are the Side Effects of a Medication Worth the Beneficial Effects?

“It’s always a balance of risks and benefits when you’re talking about medications for myasthenia gravis,” Dr. Saba said. Like any medication, those used for MG have potential side effects. You have to weigh the “benefits of the medication, namely decreasing the symptoms of the disease,” with possible side effects.

MGteam members sometimes have questions about trade-offs. One member said, “I have been refusing steroids because of the side effects, and I don’t know if I’m doing myself more harm by not taking them.”

Dr. Saba noted that the right balance between medication benefits and side effects will vary depending on the person. “When someone has very severe disease, then you may be more tolerant of a higher risk of side effects, whereas if someone has more mild disease, then you wouldn’t really want to use a medication that has a higher risk of side effects,” he said.

Finding the treatment plan that improves your symptoms while not causing intolerable side effects may take a little time. It may require some “tinkering with medications” but MG is a “very treatable disease,” Dr. Saba encouraged.

3. Am I a Candidate for Thymectomy?

A thymectomy is the surgical removal of the thymus gland. The thymus gland is found in the middle of the chest, above the heart. Removing the thymus may improve muscle weakness, reduce the amount of medication a person needs, and help to achieve remission.

Dr. Saba explained that age is an important factor in determining who is a good candidate for this procedure. “There’s a pretty good consensus that people with myasthenia who are over 60 or so do not benefit from thymectomy,” he said. However, when he is treating someone younger, he may recommend thymectomy.

Posted on June 28, 2024

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Alison Channon has nearly a decade of experience writing about chronic health conditions, mental health, and women's health. Learn more about her here.

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