The thought of not having myasthenia gravis does not bring me peace
I've fought not to let MG define me, but I feel safer knowing what I'm dealing with
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My worst fear happened this week. The antibodies whose presence often helps diagnose myasthenia gravis (MG) disappeared in my latest blood test.
My heart felt like it had stopped. Not because I felt better. Not because something changed in my body. But because I was suddenly afraid of losing the only proof I had. Afraid of doctors questioning my diagnosis again, especially since an electromyography test was negative from the start.
For a second, I asked myself something I never thought I would ask: Can we heal from MG?
My symptoms have not disappeared. So why would my antibodies? They were the strongest and only concrete proof of my condition. And now, they are gone. Taken away from me. And I am left in a strange place, somewhere between feeling like I made it all up, and feeling my body struggle in ways I cannot deny. Even my shortness of breath and my heavy legs suddenly feel less real.
The wilderness of the undiagnosed
Thankfully, my doctor did not say the words I feared the most. She did not tell me that I do not have MG. Instead, she suggested we keep monitoring my blood tests, closely observe my symptoms, and watch how I respond to medication.
But something has shifted inside me.
I have spoken about how relieved I was when I got my diagnosis. It gave a name to my pain. It gave me legitimacy. It gave me something to hold on to. Now that certainty is shaken. Nothing has changed, yet everything feels different.
The fear of going back to that dark place, where I was sick but undiagnosed, lost and not believed, came back instantly. I remember that feeling too well — the confusion, loneliness, and desperation to prove that something was wrong.
When I first saw my results, I truly felt like I was going to die, not from the disease, but from the fear of losing the only explanation I had.
I’ve begun writing down my daily symptoms, tracking what I feel, how my body reacts, what changes, and what stays the same. I will repeat my blood test in the coming months, and I’ll seek another medical opinion. Not because I doubt myself, but because I want clarity.
I have always fought not to let MG define me, but, strangely, the possibility of it disappearing does not bring me peace. I never thought I would say this, but I feel safer knowing what I am dealing with.
I thank God there is such a thing as seronegative MG. Because deep down, I think I prefer having MG in the shadows than going back to a life where I have no name for what I feel. At least with MG, I know I am not imagining it.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
Victoria Mercer
Omg this is so strange exactly what I’m going through !! It says you’re not cured but under control?? I had thyectomy in October and to be honest feel no different but as you say blood tests negative??
Sally Neil
I have had positive blood tests, then negative ones. EMG was negative. I have been diagnosed and undiagnosed with myasthenia gravis over and over. First diagnosed in 1976, and will be 83 in a few weeks. Thought it all, I have had muscle weakness of varying severity. It is a shame that a blood test has been the main criteria for diagnosis. Sometime in the future, they will find other ways to diagnose this. It makes you feel awful, to not be believed on and off after this many years.
Joseph Flora
I have seronegative myasthenia gravis and same symptoms as positive but a lot less meds to help
William E Freeman
I was dignosed with Generalized Myasthenia Gravis roughly 7 years ago. It took over 5 months for the diagnosis to be clarified as my blood work always came back negative. I had all the symptoms, including the drooping eye brow and double vision, along with muscle weakness and pain. In fact, it took an emergency hospitalization for the doctors to finally determine that there was something seriously wrong. It was not until an MG specialist determined that indeed I had the condition, although my blood work was normal, that I was finally put on medication and iv trherapy. However, it took another 6 months to determine the correct level of medication and iv therapy. Do I still have MG outbreaks, of course I do. At one point I developed shingles, which I was never told can be worse when you have MG, cause permanent nerve damage in my left foot which has resulted in my having to wear a foot brace. My heart muscles have weaken rather suddenly so now I have Afib, and my lung muscles have also gotten weaker. My condition overall is perhaps stable but I have never been free of the condition, although the blood work still sometimes shows I don't have the condition. At least in my case, blood work is not a truly accurate measure of whether or not you have Myasthenia Gravis. You need to exaime your entire body's reaction to the various symptoms in order to get a clearer picture.