June is myasthenia gravis awareness month, and as it draws to a close I thought I would share my experiences with this rare auto-immune diseease.
First of all, what IS it? Myasthenia gravis, commonly abbreviated as MG, is an auto-immune disease that affects the communication between the nerves and muscles at the neuromuscular junction. When a person wants to move a voluntary muscle, the nerve endings release a chemical called acetylcholine that is picked up by receptors in the muscle. In patients with MG, the immune system produces antibodies that attack the receptors. This action causes a reduction in the number of receptors and results in weakness and fatigue. These symptoms increase as more demand is placed on a particular muscle.
Once of the earliest and most recognizable symptoms of MG is ptosis, or drooping of one (or both) of the eyelids. The muscles surrounding the eye contain the least amount of acetylcholine receptors, and damage to them is more apparent than other muscles.
This is where my MG story begins. In 2014, after a long recovery from breast cancer, I decided to make a New Year’s resolution to start walking. I didn’t set any crazy diet or weight loss goals, or plot out an elaborate fitness regime I knew I would never keep. I just decided to walk a mile three times a week.
By April of that year my husband and I were putting in laps at the local track on a regular basis and thought it would be fun to do a 5K. What started as a trail run turned into a mud run. We were soaking wet and freezing cold by the time we crossed the finish line. And it was then that we fell in love with running.
What does this have to do with MG? I’m getting there! If there’s one thing a runner loves as much as running, it’s posting on social media that they run. And they have to post a selfie.
My selfies were all over the place. Red-faced. Sweaty. Hair in various stages of disgrace. But a common thread ran through almost all of them: drooping in my right eye.
I thought I was catching myself mid-blink. But why wasn’t my other eye that way? After a while I started making faces to distract from it or wearing my sunglasses for camouflag
It was around this time that I started to notice I was exhausted at the end of the day. Some days it was all I could do to make dinner and eat before falling asleep in the chair at 7:30. I put it down to what had become a crazy workout schedule and a stressful job.
A few years went by and nothing improved. I was still tired. I felt like it was a struggle to lift my arms sometimes My eye was still droopy. And sometimes it felt like I ran out of breath when I talked.
My husband convinced me to visit my eye doctor. After a brief discussion of why I was there and a few tests, he sat down across from me and said “Lisa, you have one of four things going on. Either you’ve had a stroke, you have Bell’s Palsy, you have a brain tumor, or you have myasthenia gravis. And I believe it’s MG.”
He set up a referral to a neurologist. Lab work confirmed the diagnosis of MG and I was prescribed Mestinon (pyridostigmine) to help control the symptoms. My local neuro thought that my MG was confined to my eyes, which is known as ocular MG (OMG). He didn’t do any muscle resistance testing and brushed off my questions about immuno-suppressants and removal of the thymus gland, both of which are common treatments for MG.
The Mestinon did improve my symptoms and I felt marginally better, but I wasn’t satisfied and asked my friend, who is also my primary care provider, to refer me to the University of Florida neurology department. That was the best healthcare decision I have ever made.
The neuros at UF were nothing short of amazing. They did a gait analysis. They checked muscle resistance and reflexes. They listened. And they decided I should be taking an immunosuppressant drug called Cellcept.
Suppressing the immune system can result in an improvement of symptoms. The drawback is that patients are more vulnerable to infections and illness – imagine dealing with THAT during a global pandemic!
But it worked. Very slowly, but it worked. And I felt better. Better than I had felt in a long time. We talked about removing the thymus gland (thymectomy), since I was an ideal candidate. Removing the thymus can improve symptoms to the point that many patients are able to reduce the amount of medication they take, and some go into complete remission.
After a consult with a cardiothoracic surgeon, we made the decision to move forward. I had a robotic-assisted thymectomy at UF Health in March, and I have seen a slow but steady improvement in my symptoms.
Looking back, I think of several instances that make me think I have had MG for a while, possibly since childhood. In PE, when everyone else ran a mile without issue, I struggled to get through one lap without feeling like my legs were going to buckle underneath me. Feeling like I couldn’t chew my food. Double vision. And the fatigue.
I remember feeling so tired, like I would rather lie in bed and let the house burn down around me than try to get up and escape.
I was told I was lazy. That I was sleeping my life away. Other people commented that they were older than me and still had more energy than I did. I questioned myself a lot. Was I really just lazy? If I’m honest, I’m a little resentful about that and it’s taken time to find some peace over it.
Fast forward to now – my overall health has improved and I have an amazing support system of family, friends, and health care providers. I feel like I have a better grasp of my disease and prognosis, and that I’m much more proactive in terms of making decisions related to my heath.
It’s been quite an adventure, and I’m just getting started!