Learning How to Better Control My MG Care

If you have myasthenia gravis (MG) then you likely know that:

• MG drugs and treatments are very expensive and often difficult, if not impossible, to get covered by health insurance.
• Most doctors, nurses, and other medical professionals know almost nothing about this rare disease. Of those who do, they still might not know enough to provide the best available care. And in my experience even doctors who are well-versed in MG often still struggle to provide the best care due to the inherent limitations of healthcare systems.
• The time and effort spent just dealing with the daily challenges of living doesn’t leave many with enough energy to seek out the best information and help.

Taking advantage of remission periods

I am fortunate that my MG symptoms during flare-ups eventually go into remission when I take enough prednisone. But, the higher levels of prednisone have led to significant damage to my body (e.g., osteoporosis, diabetes, weight gain, insomnia, and other effects). Thus, my goal is always to gradually reduce the dosage over time until MG symptoms return or worsen. This is always done under my doctor’s supervision.

I've learned to use my remission periods to actively gather as much information as I can about the physiology and treatment of MG. Examples include:¹

• The best products to assist my physical limitations, both around the home and in public
• Treatments (such as physical therapy) available to improve my muscle weakness
• The most current information on MG drugs (like Vyvgart, CellCept, etc.) and therapeutic treatments (like IVIG and plasmapheresis)
• Keeping tabs on future, more advanced drugs and treatments currently in clinical trials (such as CAR-T therapy)
• Studying what other MGers have learned about dealing with their symptoms, by attending virtual support group meetings and reading online forums

Making better decisions when it comes to my care

The more I learn about MG, the better decisions I’m able to make regarding my care. Also, the better I’m able to understand my neurologist's decisions or recommendations, and maybe know whether or not my neurologist is living up to my expectations.

For example, using my symptom-reduced and symptom-free time to gather information, I learned all about good nutrition. By learning to eat healthier, my MG symptoms and flare-ups have significantly decreased over time, and I feel healthier, stronger, and more energetic than when my MG started several years ago.

Why did I go the nutrition route? Because I was frustrated that there is no cure and so few good options for treatment for me. About the only thing I had full control over was what I put into my mouth. I was frightened that prednisone was slowly eating away at my body: my bones, my liver and kidneys, my weight gain, and even my brain function and skin integrity. I had to try something, anything!

How I gather information on MG

My first step was to gather, over several months, quality information on vitamins and supplements, gut health, and the most nutritious foods. On the other hand, I also got information on what NOT to put into my mouth. To this day I continue to seek such helpful facts.

I discovered, online, virtually all the information I needed and, simultaneously, the best and most reliable online sources. I initially accumulated a wealth of quality and verifiable nutrition facts and organized it into binders. Subsequently I had the opportunity to create a website for my region’s MG support group. I took all the web links for the collected nutrition materials and placed them into the "Nutrition" page of the new website.

Finding the best websites for seeking MG information was a learning process for me. Three main reputable sources I use are government websites (e.g., NIH.com), MG groups (e.g., MGFA, Myasthenia Gravis News, myasthenia-gravis.com, Conquer MG, Web MD, and many others), and of course Google Search. When searching I ignore any links to websites I’m not familiar with.

I also subscribe to newsletters from my best sources so that every day I get new and sometimes very useful information. I find this method to be the most useful of all. Also, as a rule, I avoid ALL social media.

How do you learn about MG? What steps have you taken to help yourself deal with MG? Let us know in the comments below.