The Beginning of a New Adventure: My MG Story
As I have mentioned before, I have Myasthenia gravis. I am what is known as Seronegative. I’ll explain all that in a bit; but, first, I just want to note that I am in no way an expert on this disorder. I can not even say I am an expert in my own body’s representation of this disorder. I am constantly learning how to deal and handle the symptoms, as well as the treatments. And, just FYI, no two MGers are the same. We all present differently, some of us even more so.
According to the National Institute of Neurological Disorders and Stroke –
1Myasthenia gravis is a chronic autoimmune, neuromuscular disease that causes weakness in the skeletal muscles that worsens after periods of activity and improves after periods of rest. These muscles are responsible for functions involving breathing and moving parts of the body, including the arms and legs.
The name myasthenia gravis, which is Latin and Greek in origin, means “grave, or serious, muscle weakness.” There is no known cure, but with current therapies, most cases of myasthenia gravis are not as “grave” as the name implies. Available treatments can control symptoms and often allow people to have a relatively high quality of life. Most individuals with the condition have a normal life expectancy.
All that sounds incredibly complicated. Basically, as most of us who have MG have learned to explain that its very similar to Multiple Sclerosis (MS), except where your body is attacking the nerves in MS, our bodies attack the muscles. It’s a bit more complicated, but that’s the easiest way to explain it to where people understand it.
Some have *only* ocular MG, where it only affects those muscles around the eyes. I say *only* not to diminish its effects, but as a comparison to the generalized MG where your entire body is affected. Either way, its usually diagnosed by blood tests that are used to detect certain autoantibodies. I say usually. In an already rare disorder (fewer than 200K US cases/year according to the Mayo Clinic), a special few have no *known* antibodies detected. These cases make diagnosis and treatment a bit more difficult to attain. We lucky few are known as Seronegative.
To put that in perspective, one of my treating neurologists who had treated MG patients for over 40 years has only had two seronegative patients. That two includes me...
It all started about 5-6 years ago. I was living in beautiful Southern California. I was incredibly active (this was during the whole p90 craze). I was actually training for a 39.3 mile walk for charity in addition to my normal training. After some of my more intense training sessions, I noticed I would start to have trouble catching my breath, though I was getting plenty of oxygen, and I would just be incredibly tired, and not just the normal after-workout tired.
When I spoke to my family practice doctor, he suggested I had exercise-induced asthma. It sounded plausible, and it did not mean I had to stop my activity, just maybe relax on the high-intensity stuff. The albuterol treatment never seemed to work, but if it got bad enough, a course of prednisone steroids often helped. Something I would remember later.
Another thing I noticed around this time was that my right eyelid was starting to droop a little. And here’s where I am always reluctant to dive in because I have always felt a little vain, but I feel I must get over that. To be honest, my eyes have always been an attribute I have been quite proud of, particularly after my children were born. People would always say they had my eyes, and follow that up with saying they had the most beautiful eyes. So when people started saying I looked tired, or ask if something was bothering me because I was smiling like I used to, I started to worry a little bit.
What did I do at this point, you ask? You assume I went to the doctor, right? You see, that would have been the smart way to handle this. Nope! Instead, I did what I am sure every doctor hates. I googled “droopy eyelid”. What I read told me that insurances tend to think of it as cosmetic (I read vanity) and will not pay for repairs unless your lid droops enough to obstruct vision. So I thought, okay, I just need to stop being so “vain” (there’s that word again) and just deal with it.
Fast forward to Fall of 2017, we are now living in a small town in Florida. I am on my way to volunteer at our church one morning, driving into the sun, when my eye completely closes on its own and refuses to open back up. Now, luckily I was just around the corner, so it didn’t cause an issue driving. I actually did not panic. I have to be honest. I felt a little bit relieved. Inside, I was thinking, “Well, at least now I can get my eye fixed.”
My next step was going to see an ophthalmologist. I had recently attended a women’s health conference and remembered one of the presenting opththalmologists. He was really funny, and he had kind of reminded me of Seth Green a little. I had the hugest crush on Seth Green back in the Buffy the Vampire days, so that was apparently enough to spark confidence in this doctor. (My husband thought this was hilarious, but was willing to go along with it.)
In that appointment, the doctor, after doing his examinations, said he would be happy to help me fix my eyelid problem, but he wanted me to have some tests run first, just to rule out Myasthenia gravis.
I am sure my reaction was comical. At the time, I had never heard of such a thing, and remember feeling dumb with my immediate response, “Ummm, what is that?”
He actually reassured me so that I didn’t feel so dumb, but emphasized it was important that I get tested because, untreated, it could be life-threatening. At that point, I remember asking, hoping he would again help me not to feel so dumb, “So, I guess I should not have waited two years, huh?”
This time, he did not make me feel any better. “Yeah, probably.”
So off I went to get tested.... I recall all that new adventure in the next post.
1"Myasthenia Gravis Fact Sheet", NINDS, Publication date March 2020.
NIH Publication No. 20-NS-768















