Dealing with unpredictable days with myasthenia gravis

Myasthenia gravis: dealing with psychological challenges
December 15, 2022
What everyday life looks like
December 15, 2022

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By Marcia Lorimer, as recounted by Hallie Levine

I have lived with myasthenia gravis for 65 years. I was diagnosed when I was 10 years old. Up until then, I was a very active kid who went from doing all sorts of sports to sudden constant exhaustion. I started choking on food, spoke slurred, and got droopy eyes. This was in the 1950’s, and after my GP couldn’t find anything wrong, he suggested that maybe I seek help. At first my parents thought I might try to imitate Marilyn Monroe. It took several months – and a hospital stay – before I got the right diagnosis.

Not much was known about MG at the time and there were very few treatment options. But over 6 decades later, there have been major advances in research and treatment. It’s true that the day-to-day management of MG can be unpredictable and challenging at times. But it hasn’t stopped me from pursuing a fulfilling career as a pediatric nurse and university professor and raising a family. Here’s some advice I give to other people living with MG to help them live fulfilling lives:

Stay up to date on vaccinations. For me, one of the biggest triggers of an MG flare-up is a respiratory infection. COVID-19 is such a looming villain for people with MG, but even a respiratory infection like a bad cold or pneumonia can pose a serious threat. Personally, I have been hospitalized after a flu attack in the past. Some vaccinations to ensure you are up to date on the COVID-19 vaccine (including your booster shot if you are eligible), influenza, pneumococcus and Tdap (it protects you from pertussis or whooping cough). Your family doctor will also advise you on other vaccinations.

Get the best possible medical care. They call MG snowflake disease for a reason: it’s different in everyone, and no two people respond to any treatment in the same way. I cannot stress enough how important it is to have a doctor who truly understands MG. You can’t just rely on your GP. My late husband, Bill, was a general practitioner of internal medicine and he got patients with MG wanting to see him because they knew I had the same disease. But that’s very different than going to a neuromuscular specialist who sees patients with MG every day.

I’ll give you a personal example: About 30 years ago, I had an unexpected horrible flare-up, and neither I nor my doctor, Donald Sanders of Duke University Medical Center, could understand exactly why. dr Sanders discussed my situation with other MG professionals, did some research, and decided that although I had my thymus gland removed as a child to treat my MG, part of the thymus gland may have remained or grown back to cause symptoms. I had a second surgery to remove it and was much better.

I might not have received the right treatment if I hadn’t had a doctor as knowledgeable about the disease and as dedicated as Dr. Sanders is to give me the best treatment. The Myasthenia Gravis Foundation of America (MGFA) has a doctor referral list from MG experts so you can find a doctor near you.

Have a strong support system. This is especially important at times of major emotional upheaval such as death or divorce. For example, I had a particularly bad attack when my father and sister-in-law died around the same time. What always eased those stressful times was having a wonderful man who was always there for me. It’s so difficult to be a parent as a person with MG because sometimes you can’t attend or go to important things like school events or sports games because you’re so exhausted. That’s why it’s crucial to have someone willing to step in and step in for you.

Joining a support group is a great way to meet others with myasthenia gravis and learn more about their experiences. The support groups are run by volunteers, who are usually MG patients or family members of patients. MGFA also has patient education materials such as webinars and patient meetings that provide important information about MG, research, and various treatment options.

Be open to trying new treatments. Thankfully, with all of the medical advances in treating MG, many people should be able to function fairly well on a day-to-day basis. It’s normal to have the occasional day off, but if you find yourself crawling back into bed frequently, it’s a sign your medication needs to be adjusted. No treatment works 100%, but you should be able to find something that works every day, all day.

Trust me, I know what it feels like to struggle: When I was first diagnosed, I was so weak I could only eat pureed food and couldn’t even speak. Luckily over the years I’ve found treatments that work.

Try to think positively. It is important not to give in to darkness and doom and instead look to what is bright in your life. People who sit around thinking clouds are forming around them making it rain every day usually won’t do as well as others who try to find happiness around them. This will help you cope when the unexpected happens. For example, the day I got married, I woke up with double vision, a symptom I haven’t had in years. It was most likely caused by the excitement surrounding my wedding. It would have been easy to get depressed, but I just decided to make the best of it and closed my eyes before each photo to conserve muscle power. It worked. My eyes may have looked droopy in some photos, but I also looked happy, and that’s what matters.

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Dealing with unpredictable days with myasthenia gravis
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