An Internal Struggle: Myasthenia gravis lurks in some who appear healthy

By Jon Gargis

In most situations, people can’t tell that Reba Herzfeld has a chronic disease that affects tens of thousands of Americans.

“To look at me, I’m perfectly healthy,” she said.

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But bright lights, humidity and fatigue are triggers that can cause her eyes to droop, a symptom of myasthenia gravis. She is one of several Jewish Atlantans who live with the autoimmune neuromuscular disease, which leads to varying degrees of weakness of voluntary muscles.

According to the National Institute of Neurological Disorders and Stroke, the disease occurs in all ethnic groups at any age, though it is most common in women under 40 and men over 60. MG is not directly inherited or contagious and has no cure, though drugs can help with its symptoms.

The Myasthenia Gravis Foundation of America reports that about 20 in every 100,000 Americans will be diagnosed with MG, but the disease might be underdiagnosed.

Herzfeld, 66, who serves as the treasurer of the Georgia chapter of the foundation, was diagnosed with MG in 2004, though her condition may have started earlier.

“I was extremely premature — weighed less than 2 pounds at birth. My problems could have started then,” said Herzfeld, a Dunwoody resident and member of Temple Emanu-El. “I always had a droopy eyelid. It looked like I was winking at photographers.”

She said it took her six doctors, including one who said, “I can’t diagnose heavy eyelids,” and 4½ years to get a diagnosis. “I went from an optometrist to an ophthalmologist to a neuro-ophthalmologist to an ocular plastic surgeon to a neurologist at Emory. That was all after going to a plastic surgeon years prior to lift my lid.”

Herzfeld’s MG affects only her eyes. Others experience more severe symptoms.

Ken Schwartz was diagnosed with MG shortly after symptoms surfaced while he and his wife were on a European cruise.

“I was having trouble after dinner speaking. I was slurring my words, and I couldn’t say certain words. I also developed some swallowing issues at the same time,” he said. “The doctor on the ship wanted to get me off the cruise, and I told him I was determined to finish out the cruise, so he told me that I had to go to the hospital emergency room at our next port and get an MRI, which I did, and the MRI was clean.”

He finished the cruise after getting a clean bill of health in Norway. “We got home, and I went to my local doctor, who recommended that I go to a neurologist, who then in about 15 minutes diagnosed me with myasthenia gravis.”

That was in July 2012. A few weeks later, his symptoms resurfaced, which led to a trip to the emergency room and a month in intensive care until about Aug. 20.

“They moved me from one hospital to a rehab center, and I basically woke up the 22nd of August and had a breathing tube, tracheotomy and a feeding tube, and after another month in rehab, I was finally weaned off all the machines and came home,” he said. He was put on a soft diet.

Schwartz’s MG is in remission with the help of prescribed medications. He hasn’t had even a mild episode in a long time, but he said that if a piece of meat is too big or not cut right, it can cause issues.

The 69-year-old Marietta resident and member of Congregation Etz Chaim said his wife, Lois, comes running if he coughs, just to make sure he’s OK. “She’s more in tune to things that I can and can’t do,” Schwartz said. “She knows that after we’re outside, for example, doing yardwork for a while, a half-hour or whatever, I’ve got to come inside and rest—things like that that you don’t even think about anymore.”

He said he can’t exercise regularly because repetitive motions make him tired. Sometimes he can swim or walk awhile; other times, he quickly wears out.

“I’m lucky that I’m alive. I came really close to not being here,” Schwartz said.

“Lucky” is how 57-year-old Michael Schwarz of Vinings describes his experience with MG. His condition has not worsened since he was diagnosed with ocular MG in 2008.

Before the diagnosis, Schwarz had persistent double vision — a definite drawback for a freelance photographer and videographer.

“It really affected my work,” he said. “I couldn’t work for a while, and when I was able to go back, I had to wear an eyepatch to help with the double vision. That kind of freaks people out when you’re a photographer and you walk in with an eyepatch.

He, Schwartz and Herzfeld are part of the patient-led Myasthenia Gravis Support Group, which meets monthly at Chamblee First United Methodist Church.

“There are people in our support group that can’t walk, have trouble eating, can’t keep a job anymore. I’m self-employed. … If I can’t work, I don’t get paid, so there was a period of time, maybe two or three weeks long, where I just couldn’t take any assignments anymore because it was getting so bad, so I had no income,” Schwarz said. “But luckily it got better.”

The eyepatch is gone, and he can see normally with the help of one medication. Seven years after his diagnosis, he is not likely to develop further muscle weakness because, according to the MGFA, those who have only ocular MG for five years are unlikely to develop additional symptoms.

“I am very lucky that it’s not on the grand scale of things,” Schwarz said. “I’m one of the luckiest patients that I know because mine hasn’t really progressed to the point where I’ve had to have some of the really tough treatments that some of the other people have had.”

Chamblee support group is open to all in the MG community, including family members and caregivers. It meets the first Monday of every month, except July and September, from 6:30 to 8 p.m. The next meeting is Aug. 3.

“A lot of people don’t seek out a support group,” Herzfeld said. “We had one young woman come to a meeting whose husband had myasthenia gravis. She was in tears — he didn’t want to come to a meeting. He didn’t want anyone to know that he had the disease. A lot of people are embarrassed. It can be debilitating.”

But for the three longtime group members, the monthly gatherings are invaluable.

“I had never even heard of it when I was diagnosed with it,” Schwarz said, adding that he has been in the support group more than five years. “To walk into a room — and maybe in the first few meetings, we had six or eight people — that was pretty emotional just to see somebody else with the disease and hear other people’s stories.

“In the beginning, I think you want to be there because you’re scared. You don’t know anything about the disease; even in many cases your doctor doesn’t know anything about it. It’s hard to find good information out there, and it’s just great to come and sit and talk with other people that have gone through what they’re about to go through.”

Schwartz has been a part of the group nearly three years, and he said the information he received helped recently when he went to the dentist for a cleaning because some shots dentists use, such as Novocain, can worsen MG.

He took a continually updated MFGA pamphlet on the topic to the dentist. “I said, ‘I know you’re busy, but you need to read this, what you can and can’t do.’ And he appreciated that, and he took the time right then and there to go through it to make sure everything he did was not going to hurt me.”

But perhaps the most important thing support group attendees have learned is that the MG struggle is not always visible to others.

“Like any other condition, you may or may not have a physical symptom. For example, I really don’t have any physical symptoms,” Schwartz said. “There are still things that I can’t do. There are still things that if I do do, I’ll get tired, and I’ll need to rest. Just because you can’t see something doesn’t mean that that person is all right, 100 percent. I know that’s hard for a lot of people to grasp. ‘Well, you look fine.’ ‘Yeah, but I feel like dog doo.’”

“In a way, it’s taught me to be patient with people,” Schwarz said. “I can be a very impatient, demanding person, but what it has taught me is that everybody’s got some struggle that they have internally, and you never know what it is. Myasthenia is one of those many, many things out there that people are struggling with, and for some people, it’s a life-altering experience. I think I’m doing well with it, and I try to live my life as I would if I didn’t have myasthenia, but there are a lot of people who just can’t do that anymore.”

More information about MG is available by visiting www.mggeorgia.org, calling 770-427-3441 or emailing info@mggeorgia.org.