âSometimes the hardest part of living with a rare disease isnât the disease itselfâitâs convincing people itâs there in the first place.â
Dear Diary,
âWhy did it take so long to figure out what was wrong with you?â
Itâs one of the questions Iâm asked most often whenever I share my story.
And honestlyâŚ
Itâs a fair question.
Looking back now, I can see clues that were there long before I ever heard the words Myasthenia Gravis.
The problem wasnât that the clues didnât exist.
The problem was that Myasthenia Gravis is incredibly good at hiding in plain sight.
It hides.
It fluctuates.
It imitates other illnesses.
And sometimes it disappears just long enough to make you question whether you imagined the whole thing.
Unfortunately, many of us living with Myasthenia Gravis know exactly what that feels like.
The Disease That Doesnât Believe in Consistency
One of the things that makes Myasthenia Gravis so difficult to diagnose is that it refuses to be predictable.
One morning you might wake up feeling almost like yourself.
By lunchtimeâŚ
Your eyelids are drooping.
Your speech starts slurring.
Your smile doesnât quite smile the way it usually does.
Your arms suddenly feel like they belong to someone else.
Or your breathing decides it no longer wants to participate in todayâs activities.
Then you finally make it to your doctorâs appointmentâŚ
âŚand somehow youâre having one of your âgoodâ moments.
Your strength looks normal.
Your speech is clear.
Youâre able to smile.
Your breathing isnât nearly as bad as it was that morning.
Itâs almost as if Myasthenia Gravis is sitting in the corner saying,
âDonât worryâŚIâll come back after your appointment.â
Seriously?
Thanks for your cooperation. đđ
My Body Was Whispering Before It Started Screaming
When I look back now, I realize my body had been trying to tell me something for quite some time.
At first, the signs were subtle.
A little more fatigue.
Getting winded easier than I should have.
Muscles that seemed to tire faster than everyone elseâs.
Then the whispers became louder.
Breathing became harder.
Simple conversations became exhausting.
Everyday tasks started requiring more energy than they should have.
My body kept sending distress signals that didnât seem to fit neatly into one diagnosis.
Appointment after appointment brought more tests.
More possibilities.
More unanswered questions.
Looking back now, my body was telling the story long before anyone knew how to read it.
âEverything Looks Normalâ
If you live with an invisible illness, youâve probably heard these words before.
âYour tests look normal.â
Normal blood work.
Normal CT scans.
Normal MRIs.
Normal routine neurological exams.
Meanwhile, youâre sitting there wondering if everyone somehow missed the elephant standing in the room.
One of the hardest parts wasnât just feeling sick.
It was trying to explain symptoms that no test seemed willing to confirm.
Itâs incredibly difficult to advocate for yourself when every report says youâre fine while your body is telling you something completely different.
When people canât see your illness, they sometimes begin to question it.
After enough appointments without answers, you may even begin to question yourself.
That self-doubt can become just as exhausting as the disease itself.
Unlike many diseases, Myasthenia Gravis often doesnât appear on routine testing.
That doesnât mean nothing is wrong.
It simply means the answer requires someone willing to keep asking questions and looking beyond the obvious.
Why Does Myasthenia Gravis Fluctuate?
One of the most confusing things about MG is that symptoms can change from hour to hour.
Thatâs because Myasthenia Gravis affects the communication between your nerves and your muscles.
The more those muscles are used, the weaker they can become.
After resting, they may regain some strengthâat least temporarily.
Thatâs why someone with MG may look completely fine during a brief doctorâs appointment but struggle to hold a conversation, climb stairs, chew a meal, keep their eyes open, or even breathe comfortably later that same day.
Itâs one of the biggest reasons Myasthenia Gravis can be so difficult to recognize.
The Great Imitator
Another reason MG is so difficult to diagnose is because it looks like so many other conditions.
Its symptoms can mimic:
⢠Anxiety
⢠Asthma
⢠Stroke
⢠Multiple Sclerosis
⢠ALS
⢠Thyroid disorders
⢠Chronic Fatigue Syndrome
⢠Fibromyalgia
⢠Sleep disorders
When your symptoms overlap with conditions that are far more common, itâs understandable why doctors investigate those possibilities first.
UnfortunatelyâŚ
Understanding why it happens doesnât make living through it any less frustrating.
My Journey Wasnât the âTypicalâ One
As if diagnosing Myasthenia Gravis wasnât already challengingâŚ
I donât even have the most common type.
I have MuSK-positive Myasthenia Gravis, a much rarer subtype that affects only a small percentage of people living with MG.
Many people associate Myasthenia Gravis with droopy eyelids and double vision.
Those symptoms certainly happen.
But MuSK-positive MG often tells a different story.
For me, breathing became one of the biggest warning signs.
Instead of immediately pointing toward a neuromuscular disorder, my symptoms sent doctors looking in several different directions.
Was it asthma?
Was it my lungs?
Was it my heart?
Was it anxiety?
The questions kept changing.
The symptoms kept progressing.
But the answers remained frustratingly out of reach.
When breathing is your biggest complaint, Myasthenia Gravis isnât always the first diagnosis that comes to mind.
Then Crohnâs Disease Entered the ConversationâŚ
ActuallyâŚ
Crohnâs Disease had already been part of my story for years.
So now every symptom came with multiple possible explanations.
Fatigue?
Could be Crohnâs.
Weakness?
Could be Crohnâs.
Exhaustion?
Maybe anemia.
Maybe stress.
Maybe poor sleep.
Maybe something else entirely.
Then add severe sleep apnea and hypoventilation to the mix, and suddenly every symptom has several possible causes.
Trying to diagnose everything felt like putting together a thousand-piece puzzle where every piece looked like it belonged somewhere else.
Looking Back
Looking back nowâŚ
I can finally see the breadcrumbs.
The symptoms that seemed unrelated.
The appointments that ended without answers.
The moments when I wondered if I was overreacting because every test kept coming back ânormal.â
I wasnât imagining it.
My body was speaking a language that simply hadnât been translated yet.
Hindsight has a funny way of making everything look obvious.
But when youâre living through itâŚ
Youâre simply trying to survive one day at a time.
If Youâre Still Searching for AnswersâŚ
If youâre reading this while wondering whatâs happening to your own bodyâŚ
Please donât give up.
You know your body better than anyone else.
If something feels wrongâŚ
Keep asking questions.
Keep advocating for yourself.
Keep seeking answers.
Find physicians who are willing to listen.
Rare diseases often donât follow the textbook.
Sometimes they rewrite it.
Never let a normal test convince you that your symptoms arenât real.
Sometimes the diagnosis isnât delayed because youâre imagining things.
Sometimes itâs delayed because the right doctor simply hasnât connected the dots yet.
As I sit here writing this diary entry, âI Can See Clearly Nowâ by Johnny Nash keeps playing in my head.
Not because everything is suddenly perfect.
Not because every symptom has disappeared.
But because after so many unanswered questions, I finally understood what my body had been trying to tell me all along.
Receiving a diagnosis didnât erase my challenges.
It didnât magically make life easier.
But it replaced uncertainty with understanding.
It gave my symptoms a name.
It gave my doctors a direction.
It reminded me that I was never imagining what I was feeling.
And perhaps most importantlyâŚ
It gave me hope.
đ Final Thoughts
Myasthenia Gravis is difficult to diagnose because it fluctuates, imitates other illnesses, and often hides behind normal test results. For those of us living with rare forms like MuSK-positive MG, the journey can be even longer.
If sharing my story helps just one person trust their instincts, ask one more question, seek another opinion, or continue searching for answers, then every difficult chapter of this journey has served a purpose.
Because sometimes the greatest victory isnât simply receiving the diagnosis.
Itâs refusing to stop searching until you finally have one.
đ Thank You for Reading
Thank you for taking the time to read this entry from The Dual Diagnosis Diaries.
If this story resonated with you, taught you something new, or reminded you that youâre not alone, please consider liking, subscribing, and sharing this diary entry.
Your support helps raise awareness about Crohnâs Disease, Myasthenia Gravis, polyautoimmunity, and the realities of living with invisible illnesses.
Together, we can educate, advocate, and remind others that no one has to navigate chronic illness alone.
Founder ⢠Author ⢠Advocate ⢠Future Wellness Coach
Kia Lorice
The Dual Diagnosis Diaries đ
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