Have you been recently diagnosed with a chronic illness called myasthenia gravis (MG)? In addition to a spinal cord injury, I was diagnosed with this rare condition, and I want to share some of what I’ve learned over the years. Here are some of the questions to ask your doctor about myasthenia gravis.
Five Questions to Ask About Myasthenia Gravis
Being equipped with knowledge is vital when talking with your doctor. If you’d like to remember your discussion, take along a notebook and pen or ask a loved one to take notes for you.
What are the symptoms of myasthenia gravis?
Myasthenia gravis is a rare chronic autoimmune disease that impacts the neuromuscular system. The main thing you may experience is muscle weakness.
Other symptoms may include:
- Droopy eyelids
- Vision difficulties
- Problems with chewing or swallowing
- Shortness of breath
- Weak limbs
Are there any specific triggers that may aggravate my symptoms?
People with MG may experience times when their condition seems worse. This is called a flare or flare-up. These flare-up events may be caused by certain kinds of triggers.
Some people may experience a worsening of symptoms due to triggers like:
- Strong scents
- Chemicals like insecticides
- Certain foods (spicy or hot)
- Stress or overexertion
- Extreme temperatures
Also, certain drugs can have an adverse impact. Talk to your doctor about which drugs or supplements to avoid.
What is the cause of myasthenia gravis?
MG is an autoimmune disorder, which means the body’s immune system mistakenly attacks its own healthy nerves and tissues. The exact cause of this is not fully understood yet, but it’s thought to be a combination of genetic and environmental factors.
What are my treatment options for myasthenia gravis?
While there is no cure for myasthenia gravis, you have treatment options. Your doctor should let you know about your options based on your specific condition.
There are FDA-approved medications that look promising in treating myasthenia gravis, including options like immunosuppressive drugs, infusions, or steroids.
Remember that your condition didn’t develop overnight, so it can take some time before your treatment helps. You may also have to try a few different options before finding what works for you. In my case, it took me eight years and four different treatments to find what worked for controlling my symptoms.
Is there a specific diet for myasthenia gravis?
Your doctor or a qualified dietician may have some recommendations for your diet. Some people with MG prefer to avoid potential triggers, such as alcohol and spicy foods. Others like to follow anti-inflammatory diets, such as the Mediterranean diet.
Again, be sure to talk to your doctor about what you should avoid, including nutritional supplements and certain drugs. For example, some people with MG may be affected by large doses of magnesium. So be careful, do your research, and talk to a professional who can give you medical advice.
Key Takeaways and Additional Questions
As someone who lives with both myasthenia gravis (MG) and paralysis due to a spinal cord injury, I understand the challenges and complications that come with managing these conditions. I like to offer insights into my personal journey and experiences in hopes that I can help someone else facing these challenges.
When MG is accompanied by another condition like a spinal cord injury, it can cause further complications. In my case, the MG symptoms have affected my bladder control and response to medication, making me more susceptible to infections and necessitating changes in my catheter type.
The Importance of Proper Diagnosis and Treatment
Getting a proper diagnosis is critical for managing MG. In my experience, the right physician will not only understand the condition but also know how to treat it effectively. Finding a neuromuscular neurologist who can create a tailored treatment plan is essential for regaining control over your life and managing MG symptoms.
Can You Work While Living with Myasthenia Gravis?
Many people with MG continue to work, but it’s essential to understand your triggers and limitations. Discuss your situation with your doctor and consider any necessary adjustments to your work environment. Some individuals with MG apply for social security disability benefits if the condition is severe enough that it prevents them from maintaining employment.
Finding the Right Exercise Routine
Managing energy levels is crucial for those living with MG. It’s important to rest when needed and avoid overexertion. As treatment progresses, energy levels may improve, allowing for increased activity. Gentle exercises like stretching and yoga can be beneficial, as can working with a physical therapist who specializes in MG.
Again, talk to your doctor about what may be right for you.
Navigating Your Myasthenia Gravis Journey
Living with myasthenia gravis can be challenging, but with proper diagnosis, treatment, and lifestyle adjustments, it is possible to regain control over your life. By asking the right questions and seeking the appropriate medical support, you can better understand and manage your condition. Reach out to your doctor and explore available resources to help you navigate your journey with MG.
Disclaimer: The opinions expressed in this blog post are for general informational purposes only. This is not medical advice, and it should not replace the advice or guidance of a qualified medical professional.