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Tag: MG
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Advice That Helps and Advice That Hurts When You Have Myasthenia Gravis
Advice That Helps and Advice That Hurts When You Have Myasthenia Gravis
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What I’ve Learned About the Challenges of MG
What I’ve Learned About the Challenges of MG
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Balancing the Good With the Bad
By Stefani Shea-Akers, as told to Keri Wiginton
In 2013, when I was an English professor at a community college, teaching became difficult. I struggled to speak during class. I had some general weakness and trouble breathing. I had to drive between classes because I could no longer walk between them.
I told a nurse practitioner about my mobility issues, but she brushed me off. I was probably imagining things, she told me. But I knew these symptoms weren’t normal. Most 32-year-olds don’t need a cane, walker, or wheelchair to get around.
My “imaginary” problems progressed quickly. And the following year, after a lot more tests, a doctor diagnosed me with myasthenia gravis (MG).
The Good and Bad of Life After MG
I was a bit of a workaholic in my former life. Things are completely different now. I had to stop teaching because my symptoms are so serious. I’m 40 now, but I lost my academic career in my 30s.
MG also took much of my independence and some of my hobbies. I used to write my own songs. But I can’t sing them anymore. Losing all that, and more, has been devastating.
Yet I’ve learned a deep lesson of gratitude. I find joy wherever I can. I know I never would’ve done that if I didn’t have this disease.
Now I try to savor moments every day. Sometimes I sit in my yard, just watching the birds and leaves. It’s a good form of mindfulness. I started painting again — I never had spare time for my art when I worked a lot.
And I still love music. I play the piano and keep up my vinyl collection.
Plus, I tap into my research and writing background. I use those skills to raise awareness about MG and share stories about my journey through chronic illness.
I also have postural orthostatic tachycardia syndrome, or POTS, an autonomic nervous system disorder. And I advocate online for the dysautonomia, MG, and rare disease communities.
How Do I Have Fun?
I’ll save my energy to play the piano, paint, or do something creative. Sometimes my husband and I will go for walks outside, and I’ll use my power chair. And like everyone else, I enjoy spending time with friends and family.
When I have to do something overwhelming — I have a lot of medical appointments, tests, and infusions — I plan a reward for myself after. It’s a lot easier to get through the hard parts of my illness when I have something to look forward to.
My reward can be something small, like watching a movie, buying a new album from a favorite artist, or eating something I enjoy. I’m a chocolate lover. But when I have to travel for appointments, my husband and I will plan what take-out food we’ll get. That makes it feel a little more fun.
What Treatments Help My MG Symptoms?
I take meds throughout the day, including an immunosuppressant. I also get IVIg infusions every week, a treatment that affects my antibodies in a way that helps my immune system.
Every day I use a BiPap (bilevel positive airway pressure) machine to help me breathe.
I also had a thymectomy in early September. That’s a surgery to remove the thymus gland. This procedure may help ease symptoms for some people with MG. It’s not right for everyone, but my doctor and I decided it’s my best chance for long-term improvement.
When I’m not recovering from surgery, I try to stay active and build up my strength. Right now, I’m working on walking longer distances. I do short walks inside my house or outdoors nearly every day. I also stretch regularly, which helps manage some of my chronic pain from injuries.
What Are My Other Strategies to Manage MG?
I follow a pretty strict routine each day. I try to eat my meals at the same time. That helps me stay on track with my treatment schedule — it’s essential to take my medication and infusion at the right time.
If I have to make a call, I’ll schedule it in the morning and plan to rest afterward. But I have to be careful about how much I speak. Talking, especially on the phone, can make my weakness worse very fast. Respiratory problems are a big issue for me.
Sometimes I can’t fully recover if I push myself too hard. So it’s second nature for me to take breaks throughout the day. But it’s not possible to avoid my triggers all the time. That includes stress and overexertion.
I’ll go into survival mode when I feel like I’m on the verge of a serious flare. I do what I call “militant” resting — I seriously limit how much I speak and move. I’ll stay on my BiPap. I may have to get my IVIg infusion earlier than usual to avoid a hospitalization.
How Do I Get Support?
My husband is my caregiver and has been for the last 6 years. He helps me with lots of things. I haven’t been able to drive in many years, so I often rely on him to go places. And he does all the cooking and a vast majority of the cleaning.
But he has a full-time job, and I know he gets tired. We try to make sure he gets breaks, too.
I’m also grateful for my family and friends who offer their support.
I’d never heard of MG when I was diagnosed. And I’m guessing most other people haven’t either. It brings me joy when someone tells me they’ve researched my condition or treatment. I know it means they’ll have a better understanding of what my life is really like.
You have MG. Now What?
A rare disease diagnosis can be the beginning of a new life. It’s OK to grieve what you’ve lost. But prepare yourself for the changes ahead. How will you accomplish everyday tasks? How will you manage your schedule?
It’s important to pace yourself. Plan for appointments and treatments. Schedule some recovery time after each task.
You may have to reframe how you think about rest. You aren’t being lazy. Breaks aren’t wasted time. Your body and mind need them, especially if you want to avoid flares.
Chronic illness can feel like a marathon. There may not be a finish line, and you may not be able to make it through the way you did before. But give yourself time and space to adapt to your new body and life.
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Managing Mental Health Challenges
By Anita Chatigny, PhD, as told to Hallie Levine
If you have a diagnosis of myasthenia gravis (MG), studies show that you have a higher risk of developing depression. This isn’t surprising. MG is a disease that causes symptoms such as muscle weakness, eyelid droop, and difficulty swallowing and breathing. All of these changes affect your ability to do day-to-day activities and to live life as you want to.
But there’s plenty you can do to protect your mental health. Here’s what I advise my patients:
Create a Partnership With Your Body
If you have MG, and are in a battle against your symptoms, those symptoms will always win. It’s more productive to create a partnership with your symptoms: Learn what triggers them and what helps relieve them. Most of the people I see with MG complain of disabling fatigue, for example. They can’t fight back against this fatigue, but they can learn how to best manage its rise and fall throughout each day.
The best way to explain this is to use the example of a personal checking account. Just like you need to put money in it a couple times a month so your account doesn’t become overdrawn, you have to do the same thing when it comes to your energy and MG. When you wake up each morning, you have a certain amount of energy, depending on how you slept the night before, your nutritional status, and any recent symptom flares. You need to learn how much energy you can use before you become overextended. Just like you can quickly blow through money in your checking account, you can use up energy, leaving you fatigued the rest of the day.
I tell my patients that there are little things they can do every day to conserve energy: for example, using assistive devices like carts to help them with household chores like setting the table, so they don’t have to make eight trips from the kitchen to the dining room. If you make these small adjustments every day, you’ll have more energy reserves. The result? You’ll feel less fatigued, and you’ll be in a better mood. It also is very powerful because it puts you back into control: you’re the manager of your own energy supply, rather than a victim of fatigue.
It also helps to readjust your mindset. So many times, people assume that an aggravation of their symptoms means their MG is worsening, and they panic. That’s not necessarily the case. If a person without MG runs a marathon, they’ll be exhausted, even if they don’t have any other underlying health issues and they’ll need days, sometimes even weeks, to recover. It’s the exact same concept with MG. If you’re feeling fatigued, or your muscle weakness seems particularly pronounced, you may have just overdone it. Your body is telling you it’s time to take a step back. Listen to it.
Be Your Own Best Advocate
Sometimes, people with MG may feel guilty about their disease and are worried that they are creating hardships for their family. If they need to excuse themselves from an activity because they’re wiped out, they may fear that they’ve let their loved ones down. This can cause stress and anxiety, but it shouldn’t. While it’s true that everyone who loves a person with MG is affected by their illness, they also understand that while it’s hard on them, it’s even harder for the person with the condition.
I encourage my patients with MG to advocate for themselves with friends and family members. Loved ones are well-intentioned, but their words of encouragement can be interpreted as words of judgment or criticism. Or they may jump in and try to do everything for the person who wants to do things themselves.
Pick the Strategy That Works for You
Everyone affected by MG is their own unique individual, and thus they’ll respond to mental health treatments and therapies differently. Some people do well with basic stress-reduction techniques like deep breathing and meditation, some thrive with a few sessions of cognitive behavioral therapy, and some have more significant issues of depression and anxiety that may require prescription medications.
There’s no blanket recommendation that will work for everyone. I tell people that I have a 3-day rule. If you feel down for a day or two, that’s fine: It can happen to anyone, even people without MG. But if it persists past 3 days, let your primary care provider or MG treatment provider know. That’s when you’ll need to seek out more support.
Break Your Challenges Into Manageable Chunks
One of the scariest aspects of an MG diagnosis may be the feeling that you’re entering into unknown territory. MG is so rare that if you’re new to the disease, you can feel very alone. Support groups can help, but if you begin to look at personal blogs or go on social media forums, MG may begin to seem as insurmountable as Mount Everest.
Instead, I advise people to break down the multiple challenges they face with MG into chunks. Put blinders on, if you will, and focus on just one issue at a time with laser-sharp precision. The first hurdle to tackle is figuring out how to get the right treatment. Once that’s done, you can move on to other challenges, such as meeting the demands of work, or carving out time to take care of yourself. Otherwise, it’s like trying to scale Everest without any climbing gear. But if you have the right tools, and focus on one chunk of mountain at a time, you’ll be able to meet the demands of MG eye to eye.
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Facing Unpredictable Days
By Marcia Lorimer, as told to Hallie Levine
I’ve lived with myasthenia gravis for 65 years. I was diagnosed when I was 10. Up until then, I was a very active child who went from playing every sport imaginable to suddenly feeling constantly exhausted. I began to choke on food, slurred my speech, and developed droopy eyes. This was back in the 1950s, so after my family doctor couldn’t find anything wrong, he suggested that I might be seeking attention. At first my parents just thought I could be trying to mimic Marilyn Monroe. It took several months — and one hospitalization — before I got the correct diagnosis.
Back then, there wasn’t much known about MG, 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 day-to-day management of MG can be unpredictable and sometimes challenging. Yet it hasn’t stopped me from pursuing a fulfilling career as a pediatric nurse practitioner and university professor, as well as raising a family. Here’s advice I give to other people living with MG, to help them live a full life:
Stay up to date on vaccines. For me, one of the biggest triggers of an MG flare is a respiratory infection. COVID-19 is such a looming villain out there for folks with MG, but even a respiratory infection like a bad cold or pneumonia can be a serious threat. I personally have been hospitalized in the past after a bout with the flu. Some shots to make sure you’re up to date on the COVID-19 vaccine (including your booster, if you’re eligible), influenza, pneumococcal, and Tdap (it protects you against pertussis, or whooping cough). Your family doctor will advise you on other vaccines as well.
Get the best medical care you can. They call MG the snowflake disease for a reason: it’s different in each individual, and no two people respond the same way to a treatment. I can’t stress enough how important it is to have a doctor who really understands MG. You can’t just rely on your regular family doctor. My late husband, Bill, was an internal family medicine physician, and he’d get patients with MG who wanted to see him because they knew I had the same disease. But that’s very different from 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 terrible flare, and neither I nor my doctor, Donald Sanders at Duke University Medical Center, could quite understand why. Dr. Sanders reviewed my situation with other MG experts, did some research, and decided that even though I’d had my thymus removed as a child to treat my MG, some residual thymus may have remained or grown back to trigger symptoms. I had a second surgical procedure to remove it and got much better.
I might not have gotten the right treatment if I hadn’t had a doctor as knowledgeable about the disease and as committed as Dr. Sanders to getting me the best care. The Myasthenia Gravis Foundation of America (MGFA) has a physician referral list of MG experts so you can find a doctor in your area.
Have a strong support system. This is particularly important during times of big emotional upheaval, such as death or divorce. I had one particularly bad flare, for example, when both my father and sister-in-law died around the same time. What always made these stressful times easier was to have a wonderful husband who was constantly there for me. It’s so difficult to parent as a person with MG because sometimes you can’t participate or go to things that are important, like school functions or sports games, because you’re so exhausted. That’s why having someone who’s willing to step in and fill in for you is crucial.
Attending a support group is a great way to meet others with myasthenia gravis and learn about their experiences. The support groups are run by volunteers who are typically 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 findings, and various treatment options.
Be open to trying new treatments. Thankfully, with all the medical advances with treating MG, many people should be able to function day to day fairly well. It’s normal to have an occasional off day, but if you frequently feel like you need to crawl back into bed, that’s a sign that your medications need 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. Thankfully, over the years, I’ve found treatments that work.
Try to think positively. It’s important to not give into the gloom and doom and instead look at what’s bright in your life. People who sit around and think clouds form around them to make it rainy every day usually won’t fare as well as others who try to find happiness around them. This will help you cope when the unexpected happens. The day I got married, for example, I woke up with double vision, a symptom I hadn’t had in years. It most likely was brought on from the excitement that surrounded my wedding. It would have been easy to become depressed, but I simply decided to make the best of it and closed my eyes before every photo, to conserve muscle strength. It worked. My eyes may have looked droopy in some of the photos, but I also looked happy, and that’s what matters.
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How to Manage Your Triggers
By Bob Averack, as told to Hope Cristol
I became an advocate for myasthenia gravis (MG) the hard way. I was diagnosed in 2006, a time before technology connected people like it does today. So, I went through a lot of trial and error when it came to managing MG.
For a while, every time I came up against a trigger, it felt like getting hit on the head with a 2×4. I’m a strong dude who didn’t want MG to dictate how I’d live my life. But MG said to me, “Oh yeah? Well, I’m stronger than you.”
The moment when the light bulb finally went on for good was when I went through a whopper of a myasthenic crisis and ended up in the Cleveland Clinic while on a trip to Florida. After 6 days in the ICU, I finally realized I needed to work with MG instead of fight it.
I’m a co-administrator of a Facebook group focused on healthy eating for MG. For a while I was the moderator of a hospital-based support group under the auspices of the Myasthenia Gravis Foundation of America (MGFA). I’m still one of MGFA’s “go-to” people for talking to people about the disease. Some of the things I talk about, besides the basic medical stuff, are common MG triggers and how to manage them. These are five of the big ones.
1) Extreme temperatures. Down here in Florida, that means heat and humidity. Standing for a few hours in this weather can really knock the stuffing out of you. You might need to lie down to sleep or end up on the couch to rest, and you might even need a pretty significant recovery time after that.
This will have a much smaller impact on your life if you plan for it, because you may not always want to avoid triggering events that are outside, like a beachside retirement party, nature-based volunteer work, or in my case in recent years, political and community activism. Here’s how you can minimize the impact of these occasions:
- Stay well hydrated.
- Find ways to get cool during and after the event.
- Get plenty of rest the night before. If you can’t do that, make naps a priority.
- Manage others’ expectations after the event. You may need time off of work or you may need to cancel other plans.
2) Lack of sleep. Lack of sleep is a major trigger for extreme bodywide fatigue. I think there’s a more profound impact when I’m not getting enough sleep versus if I was just doing physical labor, like helping a family member or friend lift or move things.
I know that if I have a couple of days of too-little sleep, I’m going to be one with my club chair. Lack of adequate sleep makes it pretty hard to muster the energy to do much of anything. My balance is affected, so I’ll be less steady on my feet. My vision is affected, so things look very blurry, very cloudy, like being in a fog. I might even experience shortness of breath, a residual symptom from my myasthenic crisis of 2013.
I can’t stress enough the critical importance of sleep. It’s not just about the rest you need to feel refreshed. The cellular regeneration that occurs during sleep is a critical part of how well you’ll feel and function the next day.
3) Excess weight. I know firsthand how important it is to improve symptoms, especially fatigue.
For decades, I had a pretty significant weight management challenge. It got to a dangerous point after my myasthenic crisis, when I was put on very high doses of prednisone. Over a 9-month period I gained 75 pounds, on top of already being overweight. It had a multiplicative effect — not just fatigue but other symptoms got worse as well.
I lost all the weight following sensible strategies and eating within an 8-hour window every day. I cut out highly processed foods and red meat, like burgers. Basically, I became 90%-95% vegetarian.
For the first time since my diagnosis, I really started to feel some sense of well-being and improvement in my life with MG. I felt stronger. I felt more stable on my feet. I felt like I could do more without it knocking me out. A big part of that is the weight loss: removing the physical weight from my body. But it’s not the only thing.
4) A lousy diet. Excess weight itself triggers inflammation. So do the foods that contribute to excess weight, like red meat and fried food. Inflammatory foods can bring on fatigue. You can feel very, very tired without having exerted yourself in any way. With dietary inflammation, I usually can feel the effects of that within an hour or two of eating or drinking the wrong thing.
If someone I’m talking to resists the idea of dietary change, I try an approach that may make them reconsider. Instead of telling them about their health risks, I might say, “Have you ever had the Impossible Burger? You’d be amazed how much the taste and texture are just like the real thing.”
5) Stress. Stress is a well-known trigger for MG, but people with MG may not realize how serious an impact it can have. There was a time in my life when one extremely high-stress conversation led to challenges with enunciation and even swallowing.
Stress also has indirect consequences for MG. In a healthy person, it can wear down your immune system enough so that bacteria and viruses, like the common cold, can get a foothold. Someone with MG doesn’t just end up with a cold, though; they get a cold plus worsening of MG symptoms, because colds tend to do that with this disease.
No one can eliminate stress, but there are ways to limit its impact on MG. If you can meditate, great. If you can do yoga, great. If you can go for a calm walk, great. And if you can’t do anything physical, listen to the voice of children playing, music, or audio books.
Your goal is to move your mind away from the ruminations. You can’t eliminate the fact that you have MG, but a lot of people have more control over their symptoms than they may realize.
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What Everyday Life Is Like With MG
By Alexandria Edwards, as told to Keri Wiginton
I have severe, refractory MG. I’m 25 now. But my symptoms started when I was 15. I was at school, and my speech started to slur. My legs collapsed. I felt really weak. They thought maybe I had a stroke. One doctor guessed it might be migraines.
I actually had myasthenia gravis. But I didn’t learn about my condition, or get the right treatment, until several years later.
How Was I Diagnosed With Myasthenia Gravis (MG)?
My MG symptoms came and went all through my late teens and early 20s. I dealt with episodes of slurred speech, droopy eyes, double vision, and muscle weakness. I would drop things randomly or fall down. I thought I was just clumsy.
Things got a lot worse when I was 22. I started to have trouble chewing, swallowing, and breathing. One time my voice completely disappeared. I went to the emergency room, but no one knew what was going on. They told me to follow up with my regular doctor.
My primary care physician (PCP) suspected MG, but my antibody tests came up negative at the time. I left without clear answers.
A month later, I ended up back in the hospital.
It was the day after Thanksgiving. I went to the bathroom and got stuck on the toilet. My legs wouldn’t work. I struggled to breathe. My head dropped, and the slurred speech came back. I had full body weakness.
My family rushed me to the ER. We learned I was in a myasthenia gravis exacerbation. I started taking a low dose of a drug that helps nerves communicate with muscles. They also put me on a steroid that suppresses my immune system.
I thought everything would be fine after that. But no one explained how I needed to change my daily life to live with MG. Over the next year, there were more trips to the ER. I even went into respiratory failure and had my first MG crisis.
But eventually, I found good neuromuscular specialists who’ve helped me form a long-term plan.
What Do My Mornings Look Like?
I wake up at 8 a.m. and take my first dose of medication. I can’t get out of bed and function without it. I lay in bed for about an hour while I wait for it to kick in. Then I’ll get up and make myself coffee and breakfast. I love french fries and eggs Benedict with a side of hash browns.
I’ll take the rest of my pills when I eat. They include another drug that suppresses my immune system.
After breakfast, I’ll get dressed. That can be tiring. I’ll need to rest after. When I feel up to it, I’ll watch my 5-month-old niece so my mom can make her breakfast. My niece weighs 15 pounds, so I can’t hold her for very long. But I play with her the best I can.
I like to take a walk outside sometime in the morning, maybe to the mailbox. But only if it’s cool enough. My symptoms flare in the heat.
Then I’ll take some time to go on Facebook and check MG community groups. I like to offer helpful advice when I can. For example, people may have problems getting diagnosed or trouble with their IVIg treatment. That’s an infusion I get through a vein in my arm. It affects how my antibodies work.
What Is My Afternoon Schedule?
I take my medication every 3 1/2 hours, which means it’s time for the second dose around 11:30 a.m. Then I eat lunch. I’ll make it myself if I’m not too tired. If I’m not up for it, my mom will help. My energy depends on where I’m at in my IVIg cycle.
On a good day, I can eat pretty much whatever I want. But that doesn’t include really crunchy things. And big burgers or tough steaks aren’t a part of my meal plan.
But sometimes I can’t swallow very well. On those days I’ll make soup or something soft. Or I’ll cut everything up into really small pieces.
If I can’t swallow at all — that happens about once a day — I’ll get all of my nutrition and meds through a feeding tube. I had one surgically put in through my stomach. I need it because even with treatment, the swallow issue has never fully resolved.
I might go shopping in the afternoon. If I do, I’ll bring my walker. I can walk short distances without a break, like to the mailbox, but I can’t stroll around a grocery store for a long time without some help.
And if I have to go to something like an all-day graduation ceremony, I’ll take my wheelchair.
Where Do I Spend My Time?
I’m at home a lot, but there’s plenty for me to do. I’m very close with my family. We do a lot of different things together. We watch TV, play board games, or play video games.
Plus, I help care for my niece; babies take up a lot of time.
My days aren’t spent at a job. But I did go to cosmetology school before my symptoms got really bad. I’m big into skin care and self-care. I like to experiment with hair and face treatments. I do that for my mom, too. That’s my love language and one way I show her appreciation.
What Tips and Tools Are Helpful for Living With MG?
I modify a lot of my daily tasks. But I’m good at adapting.
Take cooking, for example. It’s fun, and I use it as a creative outlet. But it helps to make meals in stages. I’ll do the prep and put everything in the fridge. The actual cooking comes later, and I’ll lean on my walker or rest in a chair by the stove.
Then there’s bathing. I think most people jump in the shower and think nothing of it. But it’s not that simple for me. It takes a lot of energy to get clean.
But I find showers really relaxing, especially if I’m feeling stressed or down. My shower chair has made all the difference. Before, I had to sit in the tub and ask for help when I needed to get out.
If you have MG, don’t be afraid to get tools that’ll help you get through your day.
These things aren’t a sign you’re giving up. You’re just taking control of your life to make things a little easier.
Every Day Is Different
I have a flare-up quite often. While every part of my treatment plays a role in keeping me well, medication hasn’t cured my disease.
I may always need to bookend activities with breaks. But it’s a good day whenever I can move around and get things done. On a bad day, I’m completely bedbound. Serious flares like that usually don’t get better until I get my infusions. I’m very lucky to get those at home about every 2 weeks.
MG is a serious illness. But don’t assume we can’t take part in fun things. Invite us out. We may feel well enough to go. I know I appreciate the choice of whether to say yes or no. Sometimes I may surprise you.
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How I Handle the Fatigue
By Kelly Aiken, as told to Kara Mayer Robinson
In 2012, after a few years of breathing issues, fatigue, and frequent illness, I found out I have myasthenia gravis. Now, 10 years later, fatigue is still a problem. But I’ve found ways to manage it.
Daily Ups and Downs
My fatigue gets worse as the day goes on. I tend to do best in the morning. By late afternoon, I’m wearing down.
I’m usually in bed around 6 pm. I need around 14 hours of horizontal rest, or lying in bed. If I don’t get it, it’ll catch up with me and I’ll be tired much longer.
I struggle with sleep, though. I have a hard time falling sleep and staying asleep. When it’s particularly difficult, my fatigue gets worse.
I’ve also noticed other things that trigger my fatigue, like heat, stress, illness, and bug bites. Certain foods also make it worse, like sweets and greasy foods. I do better when I eat fairly healthy.
Sometimes the fatigue comes out of nowhere. I can be feeling pretty good and then all of a sudden, I’m done.
Treatment Ups and Downs
My fatigue roller coasters a lot based on my treatment.
Every month, I receive a 5-day series of intravenous immunoglobulin (IVIg). When I’m due for treatment, I do a fabulous impression of a rag doll. I’m floppy and my body just doesn’t work as it should. Even my brain function slows down.
Before trying IVIG, I did plasmapheresis, a therapeutic plasma exchange, every week. My brain slowed down a lot and I just couldn’t think well. After 5 years, I decided to try IVIg. It made a big difference. My whole body worked better and my personality came back. Now my weakness and fatigue are better than they were before.
Strategies I Use to Manage Fatigue
I’ve figured out a few strategies and adaptations to manage fatigue and function better.
I have a gadget that breaks the seal on jars so I can open new ones easily. Automatic can openers are helpful. I even figured out that if I attach a belt to my laundry basket, I can drag it around, which makes laundry easier and works nicely when I’m doing yardwork and need to clean up weeds or sticks.
I’ve learned that if I struggle with a task, there’s often a simpler, less strenuous way to get it done. It just requires a little creativity.
For other tasks that are simply beyond my abilities, I have a few people who are always just a phone call away. While I absolutely hate asking for help, I couldn’t be more grateful for these people in my life. I’ve also learned a lot from my local MG support group.
On the days leading up to my treatment, I plan ahead. I try to make sure I have everything I may need, so I don’t have to ask for help later. I try to do everything that needs to be done, so I can rest during my series and feel as good as possible after it.
I’ve found that sometimes Tylenol can help manage the severity of fatigue. It seems to delay the onset of pain, which sometimes delays the fatigue. If I have a long day or two planned, I’ll wake up and take Tylenol first thing to help slow the fatigue and then I’ll take it throughout the day to help me last.
Some people do meditation or yoga. For exercise, I walk when my body is up for it. My happy place is the water. I love swimming laps. On my good days in the water, you’d never know I had a muscle disease. The water supports my body and my spine can stretch out. It’s one of the most amazing feelings.
Finding a Balance
I’ve found that resting when my body says to rest is the key to staying somewhat functional. If I ignore that feeling, my symptoms get worse.
Years ago, I often pushed myself until my body would stop me. Fatigue is a showstopper. There’s only so much pushing back you can do without your body giving out.
When I listen to my body, I do OK. I’m much better at listening than I used to be, but I still have to re-learn my limits once or twice a year.
Learning to Live With It
The hardest thing about the weakness and fatigue is what I’ve had to give up.
Before my myasthenia gravis journey, I worked as a teacher in a day care for children and adults with developmental disabilities. I loved working. I loved finding the right motivation to encourage children to modify their behavior and being a source of support for adults with disabilities.
I had to stop working when very quickly a whammy of symptoms hit. I’ve come around to acceptance now. I’m well aware of how hard things can get, and I’m grateful I don’t get quite that bad anymore. I’ve learned to take my bad days with a grain of salt and just ride the roller coaster until things get better again, because things will get better.
I’ve learned nothing is permanent. Everything is temporary. Feeling good is temporary, as well as feeling bad. You just have to hold tightly to that grab bar and hang on.
Feeling good is temporary, as well as feeling bad. You just have to hold tightly to that grab bar and hang on.
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Make Your Treatment Work for You
By Rabia Malik, MD, as told to Kara Mayer Robinson
Myasthenia gravis (MG) is sometimes referred to as the “snowflake disease” because no two people with MG are ever alike.
This is also true for treatment response. Like other autoimmune diseases, there’s no cure for myasthenia gravis. The goal of treatment is to have more days where you feel like yourself instead of a person with MG.
A Variety of Treatments
Your doctor may consider different types of treatment. They may have varying results.
For mild disease, acetylcholinesterase inhibitors like pyridostigmine may give you some relief.
If your symptoms are more severe, your doctor may try medications that suppress or modulate your immune system. But results often vary.
They may start with corticosteroids like prednisone. These are also known as steroids. If you need a high dosage of steroids or if your body doesn’t tolerate them, your doctor may try steroid-sparing agents, like mycophenolate and azathioprine, which are also known as immunosuppressants.
There are some other newer treatments available now as well. Monoclonal antibodies are intravenous medications that target a specific part of the immune system called the complement system. They’re usually used for people who either don’t respond to traditional treatments or have serious side effects from them. Rituximab (Rituxan) is helpful for some people with MG, particularly those with MuSK antibodies. Two others are Eculizumab (Soliris) and the one most recently approved by the FDA, ravulizumab (Ultomiris).
Efgartigimod (Vyvygart) is a new class of medication. It reduces levels of abnormal antibodies that block the signal transmission between nerves and muscle cells, which is what creates the weakness in patients with MG.
Or your doctor may recommend IV medication or thymus gland removal surgery.
What to Expect
With intravenous immunoglobulin, or IVIG, and plasma exchange, or PLEX, you may see improvement within days. With oral medications like steroids, it may take up to 2 weeks. For steroid-sparing agents, it may be several months or even up to a year.
MG medications work best if you take them consistently, without abrupt changes, so staying on track with your medication is key.
When you start taking medication, you may need to follow up closely with your doctor and complete bloodwork to make sure your body is tolerating them well.
Before you start any medication, ask your doctor about common side effects. Find out if your medication needs to be taken with food or an empty stomach.
Striking a Balance
Treating MG is about striking a fine balance between suppressing the disease and minimizing side effects. Your doctor may try different strategies to reduce side effects and improve tolerance.
For most new medications, they may start at a low dose and increase it gradually as needed.
Changing the dosage sometimes helps. For example, if you take pyridostigmine and have diarrhea, abdominal cramping, or muscle cramping, it may help to switch to a lower dosage.
If you take steroids, your doctor may recommend taking them in the morning on a full stomach to reduce stomach irritability and insomnia. Calcium and a vitamin D supplement may reduce steroids’ impact on bone density. Limiting your sugar and salt intake may help with weight gain, fluid retention, and a spike in blood sugars and blood pressure.
When Treatment Doesn’t Work
Most people with MG respond very well to medications and start noting significant improvement in symptoms. However, about 10% to 15% of people may have very resistant disease.
There are several factors that determine how you respond to treatment, including the subtype of MG and the presence or absence of thymus gland malignancy or thymoma. But there are still a number of unknown elements, which makes it difficult to predict how you’ll respond to treatment.
It’s also important to note that even though MG is characterized by fluctuations, some people develop fixed weakness, which may not respond to treatment.
Managing Triggers
Since MG is a relapsing and remitting disease, it’s helpful to identify your triggers.
Common triggers include:
- Stopping your MG medication suddenly
- Illness
- Recent surgery
- Sleep deprivation
- Stress
Reading and watching a screen for a prolonged period without breaks may bring on symptoms. It’s typical for most people with MG to experience more symptoms in the late afternoon or evenings.
It’s also important to note that certain medications, including antibiotics, and supplements, like magnesium, can aggravate MG.
Try keeping a symptom diary to track your symptoms. Note the frequency. For example, if you have double vision, is it weekly, daily, or constant? A symptom diary can help your doctor understand your response to treatment and how to modify your regimen.
Taking Care of Yourself
Medication compliance and close follow-up with your neurologist are important to get the most from your treatment and prevent MG from progressing.
Sleep Well. Try to regulate your sleep-wake cycle as much as possible. Have a consistent bedtime. Reduce stimulation in the evenings. Don’t keep your TV on in bedroom. Taking a nap during the day may combat fatigue, but try to regulate the time and duration of naps.
Eat Well. Eat a clean and simple diet. Limit processed foods. Eat more fresh fruits, vegetables, and lean proteins.
Get Moving. Start an exercise program with help from your doctor. In addition to cardiovascular benefits, exercise may help with stress reduction and muscle strength. Try exercising at a time of day when you feel your best.
Get Vaccinated. Talk to your doctor about vaccines to prevent infections. The majority of vaccines, including flu, shingles, and COVID-19, are considered safe and effective for those with MG.
Build a Good Relationship With Your Doctor
A good patient-doctor relationship is key to success. Your doctor can help you achieve the goal of having more days where you feel like yourself.
Try these tips to improve your relationship with your doctor:
- Be organized. Make a list of your symptoms and your questions before your visit. At the end of your visit, ask for instructions in writing.
- Follow up. Make sure you understand when you need follow-up visits. Find out how to best get in touch with your doctor and support staff. For example, do they prefer phone calls or an online scheduling system?
Remember, open communication with your doctor is essential.
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The Latest Treatments for Myasthenia Gravis
What are the new treatments for myasthenia gravis? An expert in the field gives an overview of immunotherapies and other breakthroughs.