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The first thing to remember is that MG is called the “Snowflake Disease” because it varies in each of us.
Be careful about taking more Mestinon (Pyridostigmine) than prescribed because the trick is to hit just enough to help with your symptoms – the medication sweet spot. Too much pyridostigmine can be just as bad as too little –by actually increasing symptoms! Over time, most likely your medication will need to be increased, and even possibly decreased or even discontinued (like mine during a remission that lasted almost 10 years before returning). Eventually, you will learn more about how you respond to your medication. But it’s best to first talk to your doctor about what to do when you have a flare up. Don’t just sit back, push your doctor to find the answers that you need.
In my 40s, my ocular MG first appeared as ptosis, which was quickly diagnosed because my ENT referred me to a neurologist. In the beginning only a relatively small amount of Mestinon (Pyridostigmine) was needed to control my symptoms. Then extreme fatigue started, so Provigil (Modafinil) was added. Plus, during flare ups (usually after an infection), Prednisone would be added. Over time, the dosages all of these medications increased. Through all of this, I was fortunate that my husband never complained as he carried the weight of the day-to-day home duties and provided me with the love and support that I needed.
Over the years, my classification changed to generalized MG. By this time, my symptoms increased and expanded beyond just my eyes to include muscle weakness of my arms/legs and eventually breathing. Eventually, I was hospitalized due to total paralysis during a myasthenic crisis. During my15-day stay, I was given massive amounts of IV steroids to suppress my immune system followed by a multi-day IVIg treatment. This returned me to a functional level, so I could return home. After the improvement only lasted a few months, I followed my doctor’s advice to retire (disability) and focus on reducing stress and taking care of myself. Within the next year, I was shocked to be told that I was in remission and no longer needed any MG medication! My remission allowed my husband and me to travel and for me to enjoy many activities, hobbies and even dance again. And when my husband’s health declined, it gave me the ability to take care of him during his last years.
Now, that my MG symptoms returned last year, I find that the symptom that bothers me the most is the extreme fatigue. The drooping eyelids (ptosis) quickly expanded to arm/leg muscle weakness. I find that it’s much more difficult adjusting to having MG again – especially being on my own. But I’m determined to deal with my MG and find a way to still enjoy my life.