The seronegative roar: A battle cry for the invisible warriors
We fight against our many symptoms as we fight for our diagnosis
Listen up, my fellow seronegative warriors. This is your wake-up call.
I know the fight you’re in with myasthenia gravis (MG) because I’m in it, too. You’ve been poked, prodded, and told, “But your tests are normal.” You’ve seen the raised eyebrows, felt the silent doubts, and wondered if maybe, just maybe, you’re imagining it. Let me tell you right now: You are not.
You are not weak. You are not lazy. You are not making it up.
You are a warrior. A battle-worn, bone-deep exhausted, sometimes-need-to-sit-on-the-floor warrior. And I need you to stop tearing yourself down like you’re the enemy. The world does enough of that for us.
Stop apologizing for your limits. Stop feeling guilty for resting. Stop thinking your worth is measured by what you can do in a day.
We may not have the lab results that scream “disease” to the world, but we have the truth written in every breathless step, every dropped fork, and every moment we push through the fog and fatigue. Our battle isn’t less real just because it’s harder to see.
And yet, I know how easy it is to doubt yourself. When doctors shrug or tests come back “normal,” the seed of self-doubt plants itself deep. You start questioning if you’re overreacting, if you’re just out of shape, if maybe you’re just broken in some way you can’t explain.
But hear me: You are not broken.
You’re carrying an invisible weight that most people will never understand. And instead of letting it crush you, you still show up. Maybe you show up differently than you used to. Maybe some days, showing up looks like getting out of bed, brushing your hair, and making it to the couch. Maybe other days, you take on the world and then pay for it later.
Both of those are victories.
You know your body
Do not let a faulty test define you. Do not let a doctor’s doubt write your story. You know your body. You know your struggle. And if no one else is listening, then fine; we’ll listen to each other.
So here’s what we do: We get up when we can. We rest when we must. We fight with everything we’ve got.
We advocate for ourselves. We educate those who don’t understand. We push for answers, for treatments, for the recognition we deserve. And in the meantime, we refuse to shrink under the weight of this illness.
I won’t sugarcoat it; this fight can be brutal. The exhaustion is relentless, the muscle weakness unpredictable, and the frustration of being dismissed is a wound that never quite heals. But you’re not alone in this battle. We stand together, an army of the unseen, refusing to be ignored. (If you need support, please join us over in the forums.)
So stop the self-loathing. Stop the guilt. Stop waiting for someone else to validate your pain before you allow yourself to take up space in this world.
You are enough. Right now. As you are.
MG may be strong, but so are we.
Now pick yourself up, warrior. You’ve got a battle to fight.
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.
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Jesse
I have gMG and this is so beautifully spoken. Believe me we see you. We are in the fight with you too.
Carol Lawson
I have lived with generalized MG since 2007, and went through 4 years of hell before being diagnosed by an expert. We are given a pejorative label of “seronegative “ when they only use 2 tests for antibodies, ( there are others) and over-rely on 2 tests, that miss approximately 15% of us, and have an inability or aversion to using clinical observation. We are treated like an undesirable stepchildren, with regard to treatment. other specialists who see this label and assume we are mentally ill because our symptoms are otherwise inexplicable; we are excluded from treatment development and clinical trials. There is a lack of curiosity by the professionals about our presentation. I feel that our label should be changed to “MG Type 3” or Type C, as is done with other diseases, so that we are no longer terrorized and victimized by the medical professionals when we, of necessity, have to engage them on a miserable ongoing basis.
Deb L
Thanks! I needed that!!
Betty Thaldorf
I was told by a neurologist at the Mayo Clinic in Rochester that he thinks I have PTSD from the years of dealing with doctors who would not listen and would not give me the treatment I needed. He said he has seen it in other seronegative patients who have been traumatized by the medical community before they finally get the treatment they need.
"Douglas Brooks
I am a seventy-seven year old Vietnam vet with seronegative MG. A double vision event was misdiagnosed fifteen years ago as a possible capillary rupture that went into remission because my body repaired itself. When the double vision happened a second time years later, and all ER screens were inconclusive, a consulting neurologist got the diagnosis correct based to the repeat occurrence. My current neurologist (civilian) says he could help me but the diagnosis prevents insurance reimbursement for treatments.
I also have had hypothyroidism for fifty years and the VA recently recognized agent orange as a contributing factor so I have filed a claim. I was at Camp Tien Sha in DaNang for a year. They sprayed agent orange on the camp perimeter for about two hundred yards, built double security fences and mounted three 50 Cals on towers at the corners. All at the base of Monkey Mountain. Then they proceeded to drill a water well on the same field and pipe our drinking, bathing and cooking water down into the camp. (ironically the camp was bound on two sides by public roads that had two rolls of razor wire that any junior VC could have crossed with a ladder).
My question to you is, if I changed my neurologist to the VA would it be possible for me to get the treatment that the civilian doctor can't authorize unless I pay out of pocket.
Wanda
I went through this and my EMG was not normal. It had been 20 years with MG and Doctors telling me I was depressed and fatigue was not one of MG symptoms. I do have a better neurologist now and am very thankful. The stigma stays when I have an appointment ( in my head I think they don’t believe me).
BethG
I am check point inhibitor induced seronegative myasthenia gravis. I have been diagnosed since 2022. I started with symptoms after two doses of Keytruda for kidney cancer. I woke up one morning and my peripheral vision was off and the next morning I couldn’t open my eyes. When I held them open my left eye was all the way up and to the left. I got in to my oncologist and then it almost took two weeks to see an eye doctor. In the mean time I could not work because I couldn’t see and had no idea what was going on. Finally saw eye doctor and he said it was probably Mysthenia gravis. He ordered labs and said I need to see a neurologist. In the mean time he spoke to my oncologist. Oncologist got me in with a neurologist out of my insurance tier one network that day. All the labs came back negative (AChR neg, MUSK neg, RNS neg) Started Prednisone right away. Eyes open a little bit but not a lot and double vision never went away. Within 2-3 months I started having breathing problems. The neurologist I was seeing go me in with on with my insurance and where I work. I saw him two days later and got admitted to the hospital from his office for breathing issues. With all of this I started ocular and went generalized in a three month time frame. I was started on IVIG in the hospital along with the prednisone and CellCept. Today I only take CellCept. I’ve had double vision for three years and I alternate covering (patching) my eyes daily to function.
I hope and pray that one daily my vision goes bad to normal or gets to where I can have surgery or prisms. Or maybe they will come up with something that will help.
BethG