By Ricardo Roda, MD, PhD, as told to Sonya Collins
I love my patients with myasthenia gravis, and I learn so much from them.
The most important things I’ve learned from them are enormous resilience and optimism.
The Frustrations of an MG Diagnosis
Myasthenia gravis comes with a lot of frustrations for patients, from diagnosis through treatment of the condition and management of their symptoms.
For some patients, just getting a diagnosis can be very frustrating. They may have what we call seronegative myasthenia gravis, which means they don’t have the antibodies that people commonly have in this disease. That makes it very hard to get a diagnosis. For these patients, just getting to an answer can be an odyssey.
Once you have the diagnosis, there’s enormous uncertainty.
Most people don’t know what the disease is. Few know anyone who has it. Unfortunately, the information that people get about the disease at first is not always from a doctor but from the internet. While there are a lot of great, well-researched, and respectable sources of information online, some are not. This means that many newly diagnosed patients, before sitting down with me, may have a lot of inaccurate information.
Their first frustration is not fully understanding the disease they have. I spend a lot of time educating patients about the disease.
But perhaps the greatest frustration, for many at least, is getting the condition under control. Together, we have to go through the process of trying many treatments, get past the anxiety, and find hope – of which I believe there is reason to have plenty.
Hanging in There Through the First 2 Years
For most patients, the first 2 years are the toughest. I try to emphasize for patients that those first couple of years are going to be the most challenging. But after that, we should have good disease control, and they should be able to resume their lives pretty much the way they did before.
For some patients, the first set of medications we try works very well. But sometimes we have to try multiple different kinds of combinations of medications before we find the ones that work. Some patients have other medical conditions that keep us from using some treatments. Diabetes, for example, limits our ability to use prednisone. Sometimes, people have allergies to other medications, so we can’t immunosuppress them.
One of the treatments we have, which is really cumbersome, is called plasma exchange and should only be used for a short time. The patient has blood filtered through an implanted catheter. Some patients who have no response to other medications come for that. Before we try plasma exchange, we first have to go back over all the past treatments and make sure each one was tried long enough and at the appropriate dose before we resort to this one. Sometimes we have to give one more drug another try first. It’s a difficult conversation to have.
All of this can be extremely frustrating for patients. We have to work through it together. It’s a journey.
For these reasons, I think it’s good for patients to have a 2-year timeline in mind and they can focus on that. That’s usually how long it takes to get better.
The Joy of Finding a Treatment That Works
It’s very gratifying for me when I see patients improve after these kinds of challenges in finding a treatment that works. I had one patient who was getting plasma exchange twice a week. She had stopped working. She had lost a lot of weight. It turned out, she had this one particular type of myasthenia gravis that responds to one particular medication. We put her on that and within a year she was back to work, gained weight, and told me she had her life back. I was so proud of her for hanging on through that whole process.
Of course, there are always patients who don’t respond to the medications we have available.
I also learn a lot from patients who we can’t treat completely. One problem they have is with energy. They have taught me how they manage their energy more efficiently to be able to live their lives. They share their different coping strategies – for example, to break up activities throughout the day – and how these really make a big difference for them.
This is a tough disease, and my patients are so resilient in the face of it. I think it’s a two-way street in terms of what they get out of working with me and what I get out of working with them. I have a lot of respect for them, and I deeply admire their optimism and resilience.
Show Sources
Photo Credit: iStock/Getty Images
SOURCE:
Ricardo Roda, MD, PhD, director, Myasthenia Gravis Center; assistant professor of neurology, Johns Hopkins University School of Medicine, Baltimore.
