11 things to know about life with MG
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(HealthNewsDigest.com) – If you’ve been diagnosed with myasthenia gravis, you probably already know there is no one path that this neuromuscular condition follows. Often referred to as “the snowflake disease,” myasthenia gravis, or MG, affects each person differently.
Myasthenia gravis is an autoimmune disease characterized by muscle weakness of the voluntary muscles. The more these muscles are used, the more they weaken. That means everyday activities like keeping your eyes open or holding your head up can become challenging by the end of the day.
Here, Matthew Meriggioli, MD, a neuromuscular expert at Rush, offers perspective on what someone should know about living with myasthenia gravis, along with the following tips.
1. Work with your doctor to keep your MG under control.
When people first get diagnosed with myasthenia gravis, they often think it’s going to prevent them from living a full life.
“But myasthenia is very much a treatable condition,” Meriggioli stresses. “The right treatment course can be complicated and take a while to reach, but eventually we get there in most patients.”
Being an active partner with your doctor is one of the best ways to find the right treatment path for you. That process will often require back and forth with your doctor to determine which medicines — and doses — are right for keeping both your MG and your medication side effects under control.
2. Study your body.
Because each person’s myasthenia is different, it’s critical to keep track of how you feel throughout the day — both for your sake and to help your doctor tailor your treatment.
That includes the following:
- Make note of which symptoms you are experiencing when, and how long they last. Record what activities you are doing when your symptoms appear to try to identify triggers.
- Take note of what time of day you feel strongest, and during which activities.
- Record all your medicines and their doses, along with side effects.
3. Know when to get a second opinion.
The diagnosis of myasthenia gravis can sometimes be hard to make, particularly if the acetylcholine receptor (AChR) and muscle specific tyrosine kinase (MuSK) antibodies are negative, according to Meriggioli.
Second opinions about your treatment can also be helpful because, as Meriggioli notes, “regimens vary, and there’s no entirely reliable way to predict how people will respond to different therapies.” And in some cases, your physician may not be comfortable with a particular medication, and therefore may not consider that medication as an option for you.
For reasons such as these, Meriggioli and his colleagues frequently see patients seeking a second opinion.
4. Exercise with caution.
As you would expect, exercise is tricky with MG. The ideal exercise program helps you maintain muscle strength and overall endurance, without expending too much energy for the day on this one activity.
Here are a few tips for exercising with caution, according to the Myasthenia Gravis Foundation of Illinois:
- Start slowly and with guidance from your health care provider.
- Exercise in short lengths of time and only to moderate intensity.
- Exercise at your best time of day. From your experience, look for the times when you are strongest, your symptoms are less prominent and your medication is at its peak.
- Focus on the proximal muscles. These are the muscles closest to the trunk of your body and are also referred to as your “limb-girdle” muscles. Recumbent stationary bicycles or elliptical machines with stationary arms (for stability) are two good choices of equipment for working these muscles safely.
5. Look for ways to save your energy.
The Myasthenia Gravis Foundation of Illinois offers a helpful rundown of all the ways in which you can conserve energy throughout the day. Here are a few ideas:
- Get help with daily tasks: There are lots of tools available to help you perform everyday tasks more easily, including masks for your eyelids; a neck brace; and gadgets that help you pour from large containers.
- Nap when you need to: Listen to your body when it tells you to slow down and stop for a while.
- Sit down whenever possible: Sit rather than stand in the shower, while shopping (making use of scooters), while brushing your teeth or shaving, etc.
- Minimize distances: If you don’t already have one, apply for a handicap car sticker so you can park closer to stores; place items that you need to use frequently within reach while standing, rather than in places that force you to reach up or bend down.
- Take a look at your posture: Good posture can help with a variety of issues: It helps you conserve energy by using your muscles in the most efficient way, and it can help with breathing and swallowing by creating more room in your shoulders and chest.
6. Talk to your doctor about whether immunosuppressives or anticholinesterases are right for your form of MG.
Since everyone’s form of MG and experience with the condition is different, so too is everyone’s treatment. However, not all treatment options will address your underlying condition. “For most of my patients, immune treatment is eventually needed since anticholinesterases like Mestinon commonly do not fully control symptoms,” says Meriggioli.
“Anticholinesterases make the symptoms of myasthenia better temporarily, but they don’t treat the underlying disease itself. If someone is dependent on this, any one stressor — like a surgery, illness or infection — can throw them out of balance and lead to a significant exacerbation of their myasthenia.”
We are constantly monitoring our patients for side effects, and we try to identify the minimum dose of medication needed to get myasthenia under control.
7. Find out whether thymectomy is an option for you.
For people with MG who have thymomas that are evident through imaging, thymectomy (removal of the thymus) is recommended.
“And even without a thymoma, in people with disease onset before 50, we consider thymectomy as an option to augment the immunotherapy,” Meriggioli says.
“The idea is that the thymectomy will increase the chance that the patient will go into remission and lessen the overall cumulative exposure to immunosuppressive drugs.”
8. Pay attention to medication side effects.
“In most cases we can get the disease under control with the right combination of medications, but the issue is that the medicines we have to use have significant side effects,” Meriggioli says.
For instance, because chronic steroid use can cause osteoporosis, Meriggioli and his colleagues will often prescribe vitamin D and calcium as preventive measures, and sometimes a bone bisphosphonate drug, which prevents the loss of bone mass.
“We are constantly monitoring our patients for side effects, and we try to identify the minimum dose of medication needed to get myasthenia under control,” Meriggioli says. “And then we try to reduce that each time we see a patient in the clinic.”
9. Address your nutritional needs and swallowing considerations.
Because prednisone — frequently used to treat for MG — can cause weight gain, Meriggioli and colleagues encourage patients to meet with a dietitian who specializes in helping people avoid weight gain through low carbohydrate, high protein diets. Patients have also benefitted from the anti-inflammatory diet, which is designed to reduce inflammation in the body through the consumption of naturally occurring phytonutrients.
In addition, people with MG may find that muscle weakness in their jaws, throat and lips can affect their ability to swallow. The good news, according to Meriggioli, is that once people with MG find their optimum treatment regimen, their swallowing tends to get better.
Here are a few tips that can help at mealtime:
- Eat small meals throughout the day rather than big meals that can cause your muscles to tire during the course of the meal.
- Take small bites of food to avoid taxing your jaws and throat.
- Avoid hot or warm liquids that can relax the throat muscles.
10. Invest in stress management.
Like it does with many conditions, stress can trigger or worsen your myasthenia symptoms. Although it’s often easier said than done, try to look for ways to effectively manage your stress, such as regular meditation (e.g., through a mindfulness-based stress reduction program) and/or moderate exercise.
And remember to let your doctor know if you are having trouble managing stress. He or she can refer you to a professional who can help you find effective methods of stress reduction that work for you.
11. Recognize when it’s an emergency.
Despite your and your doctor’s best efforts, you may still experience a myasthenic crisis. The most common triggers for a crisis are too rapid medication withdrawal or issues that really stress your system, like surgery, an infection or illness.
During a crisis you may have severe breathing or swallowing difficulties to the point that you require ventilation or intubation. If your weakness worsens rapidly, call your doctor immediately. If you are unable to reach your doctor or your breathing or swallowing problems are severe, call 911.
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