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If you've been diagnosed with myasthenia gravis, you may already know that that this neuromuscular condition does not follow the same path for each person. Often referred to as "the snowflake disease," myasthenia gravis, or MG, affects each person differently and likewise, treatment must be individuallized.
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 such as keeping your eyes open, holding up your head or using your arms for overhead activities can become challenging by the end of the day.
When people first get diagnosed with myasthenia gravis, they often think it’s going to prevent them from living a full life.
"Myasthenia is a very treatable condition," Soni emphasizes. "The specific treatment course can vary between people and take time to reach. Adjustments may also need to be made with certain activities, but the goal is to have everyone live a full, functional life."
Regular follow-up and communication with your doctor is one of the best ways to find the right treatment regimen for you. The process will often require frequent discussion with your doctor to determine which medicines — and doses — are right for keeping both your MG and any medication side effects under control.
Because each person's myasthenia may not affect them in the exact same way, 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.
This tracking includes the following:
Myasthenia gravis can be challenging to diagnose, particularly if blood tests for the acetylcholine receptor (AChR) and muscle specific tyrosine kinase (MuSK) antibodies are negative, according to Soni.
"A second opinion can help both with confirming the diagnosis and ensuring the best individual treatment approach," Soni adds. "In some cases, your physician may not be as comfortable or familiar with a particular medication, and therefore may not consider that medication as an option for you.
For reasons such as these, Soni and her colleagues frequently see patients seeking a second opinion.
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 and causing fatigue that may limit your ability to engage in other activities.
Here are a few tips for exercising with caution, according to Conquer MG (formerly known as the Myasthenia Gravis Foundation of Illinois):
Conquer MG offers a helpful rundown of all the ways in which you can conserve energy throughout the day. Here are a few ideas:
Since the type of MG, symptoms and experience with the condition may vary from person to person, treatment must be individually tailored. The available treatment options work in different ways.
"Pyridostigmine (also known by its brand name Mestinon), is an anticholinesterase medication. It helps temporarily with symptoms in most patients with MG. However, those with the MuSK antibody may be more sensitive to the medication and not tolerate it well," explains Soni. "In addition, anticholinesterase medication does not target the underlying immune problem in MG. For those with more than mild symptoms, immunosuppressive therapy is generally needed."
We closely monitor our patients for side effects, and we try to identify the lowest dose of medication needed to get their myasthenia under control.
For people with MG who have thymomas (tumors of the thymus gland) that are evident through imaging tests, thymectomy (removal of the thymus) is recommended.
Results from an international, multicenter study published in the New England Journal of Medicine in 2016 showed that even in a specific population of AChR antibody positive MG patients without a thymoma, thymectomy showed a benefit in reducing symptoms, medication requirements and the need for hospitalization to manage exacerbations, Soni reports.
"Each medication has its own side effect profile, even over the counter medications. Being familiar with the possible side effects, taking the appropriate precautions and reporting any new symptoms are all part of the management of myasthenia," Soni says. "We closely monitor our patients for side effects, and we try to identify the lowest dose of medication needed to get their myasthenia under control."
As noted earlier, regular communication and follow-up allows your doctor to find the right combination of medication to manage the myasthenia while minimizing side effects.
Predisone — a steroid medication frequently used to treat for MG — can cause increased appetite and weight gain. Soni and her colleagues, therefore encourage patients to meet with a dietitian who specializes in helping people maintain a well-balanced diet and educating them on low-carbohydrate, high-protein foods.
In addition, people with MG may find that muscle weakness in their jaws, throat and lips, jaws and throat can affect their ability to chew or swallow. The good news, according to Soni, is that once people with MG find their optimum treatment regimen, these symptoms tend to improve.
Here are a few tips that can help at mealtime:
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), recreational/inspirational reading, listening to music and, if possible, regular low-impact exercise.
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 best for you.
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 other 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 if your breathing or swallowing problems are severe, call 911.
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