Celebrating the Anniversary of My MuSK-Positive Myasthenia Gravis Diagnosis
Dear Diary,
I never imagined I would celebrate the anniversary of being diagnosed with a rare autoimmune disease.
Yet here I am.
Not because Iâm grateful to have Myasthenia Gravis.
No one hopes to hear those words.
Iâm celebrating because this anniversary represents something much bigger than a diagnosis.
It marks the day someone finally believed what my body had been trying to say all along.
For months, my symptoms spoke louder than any medical record could. They interrupted conversations, stole my breath, weakened my muscles, and left me wondering why my body no longer felt like my own.
Then one blood test changed everything.
Not because it made me sick.
I already was.
It simply proved I wasnât imagining it.
đŚ When Crohnâs Wasnât the Whole Story
Living with Crohnâs Disease had already taught me how unpredictable autoimmune diseases could be.
I knew fatigue.
I knew inflammation.
I knew hospital visits.
I knew what it felt like for my immune system to declare war on my own body.
But this was different.
Crohnâs had never made me wonder if I would catch my breath after walking across a room.
Crohnâs had never made my voice weaken halfway through a conversation.
Crohnâs had never made chewing dinner feel like exercise.
Something had changed.
I couldnât explain it.
But I knew my body well enough to know this wasnât âjust Crohnâs.â
Like so many people living with invisible illnesses, I began questioning myself because everyone else seemed to question me first.
Was I stressed?
Was I anxious?
Was I simply exhausted?
Deep down, I already knew the answer.
𩺠The Long Road to an Answer
Before I ever received a diagnosis, there were countless appointments, tests, referrals, and sleepless nights.
There were pulmonologists trying to understand why breathing had become so difficult.
ENT specialists searching for answers.
Neurologists putting together pieces of a puzzle no one else could fully see.
There were moments of fear.
Moments of frustration.
Moments when I wondered if tomorrow would be any better than today.
Looking back now, my immune system had been dropping hints for months.
Apparently, it skipped subtle and went straight to dramatic.
đ The Test That Finally Believed Me
Then came the blood work.
The MuSK antibody test.
A few tubes of blood accomplished what months of uncertainty could not.
The results confirmed I had MuSK-positive Myasthenia Gravis, a rare subtype that affects only about 5â8% of people living with Myasthenia Gravis.
Suddenly everything made sense.
The breathing problems.
The muscle weakness.
The fatigue.
The fluctuating symptoms.
The fear.
Nothing had been âall in my head.â
My body had been telling the truth from the very beginning.
The test didnât create my illness.
It simply gave it a name.
For the first time in a long time, I felt something I desperately needed.
Validation.
đ What Is MuSK-Positive Myasthenia Gravis?
Myasthenia Gravis is an autoimmune disease that disrupts communication between nerves and muscles, leading to muscle weakness that often worsens with activity.
While most people with MG have antibodies against the acetylcholine receptor (AChR), a much smaller percentage have antibodies against muscle-specific kinase (MuSK).
MuSK-positive MG often affects the muscles involved in:
- Breathing
- Speaking
- Swallowing
- Facial expressions
- Neck strength
Because it is uncommon and symptoms can fluctuate, diagnosis is sometimes delayed, leaving many patients searching for answers long after symptoms begin.
I know that search all too well.
đť Life After the Diagnosis
Receiving a diagnosis wasnât the finish line.
It was the beginning of learning how to live differently.
Since that day, Iâve become fluent in medical terminology I never wanted to learn.
Iâve met neurologists, pulmonologists, ENT specialists, respiratory therapists, infusion nurses, sleep specialists, and countless other healthcare professionals.
Iâve undergone procedures, sleep studies, pulmonary testing, infusions, and more appointments than I can count.
Iâve learned that rest is productive.
That asking for help isnât weakness.
That slowing down isnât giving up.
Most importantly, Iâve learned not to take an ordinary breath for granted.
There have been setbacks.
There have been hospital visits.
There have been moments that scared me.
But there have also been victories.
Rystiggo has helped me regain pieces of my life I wasnât sure Iâd ever get back.
Some days I still struggle.
Other days I realize Iâve done something that once seemed impossible.
Those ordinary moments have become extraordinary victories.
âđ˝ Finding My Purpose
Looking back now, I realize my diagnosis didnât just change my treatment plan.
It changed my purpose.
Without that diagnosis, there would be no The Dual Diagnosis Diaries.
No platform dedicated to raising awareness.
No community built around hope, education, and advocacy.
What began as one womanâs search for answers has become an opportunity to help others feel seen, heard, and understood.
If sharing my journey helps even one person recognize their symptoms, ask one more question, or keep advocating for themselves, then every diary entry has served its purpose.
đś Soundtrack of the Day
Thereâs a lyric from Mariah Carey and Whitney Houstonâs When You Believe that continues to resonate with me:
âThere can be miracles when you believe.â
For me, believing wasnât about pretending everything would be okay.
It was about believing myself long before the laboratory ever did.
EventuallyâŚ
Science caught up with what my body had known all along.
đ Reflection
If I could sit beside the woman who was still searching for answers, I would tell her this:
Keep speaking up.
Keep asking questions.
Keep trusting yourself.
You are not imagining this.
You are not weak.
You are not lazy.
You are not âjust anxious.â
One day, someone will finally connect the dots.
One day, the answers youâve been searching for will arrive.
That day wonât erase everything youâve endured.
But it will replace uncertainty with understanding.
And that changes everything.
đ To Anyone Still Searching
If youâre reading this while navigating unexplained symptoms, endless referrals, or waiting for the right test to provide answers, please donât lose hope.
You know your body better than anyone else.
Keep advocating.
Keep asking questions.
Keep believing yourself.
Because sometimes, before the laboratory catches upâŚ
You have to be the first person willing to believe your own story.
Final Thoughts
My diagnosis didnât make me sick.
I already was.
It gave my symptoms a name.
It gave my doctors direction.
It gave me access to treatment.
It gave me hope.
And perhaps most importantlyâŚ
It reminded me that I was never imagining any of it.
The test didnât give me Myasthenia Gravis.
It finally believed me.
Thank you for spending part of your day with me.
If this diary entry resonated with you, I hope youâll share it with someone who may still be searching for answers. Together, we can continue raising awareness about Myasthenia Gravis, rare autoimmune diseases, and the importance of listening to our bodies.
Please consider liking, subscribing, and sharing The Dual Diagnosis Diaries. Your support helps raise awareness, encourage advocacy, and remind others living with invisible illnesses that they are never alone.
With gratitude,
Founder ⢠Author ⢠Advocate ⢠Future Wellness Coach
Kia Lorice
The Dual Diagnosis Diaries đ
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