Imagine going to the doctors one day and leaving with the knowledge that you most likely have some kind of disease.
You see very rarely do you go from being healthy to life altering sick straight away. It's not like tearing away a bandaid quickly to get the hard part over with quickly. The process to diagnosis is often a slow one, filled with anxious days and nights, numerous blood tests to the point where you wonder how you can possibly have anything left in you and often changing doctors like underwear.
It's a rollercoaster.
"Well you haven't had a stroke like we suspected but we need to rule out lymphoma"
"You're clear for lymphoma but we need to send you for another MRI to check for MS."
I got to a point where i started to feel numb about it all. I just wanted an answer.
Was it all in my head?
I didn't have MS or lymphoma and I hadn't had a stroke. My brain MRIs were unremarkable and blood tests didn't show up anything except for some unknown autoimmune issues that didn't match the symptoms I was experiencing. I remember my GP saying that it had to be autoimmune related. After all it's usual if you have one autoimmune disease that you may have multiple and apparently autoimmune diseases can be tricky to diagnose. The ultimate mimickers and ninjas, often hiding away, not showing in blood work and symptomatically appearing to be something else.
I remember the day i first heard the words, Myasthenia Gravis. My beautiful friend Katie had taken me to an ophthalmologist appointment which had been ordered by my first Neurologist.
We were there for hours, not waiting but going from room to room as they did test after test on my majorly fatiguing eyes. They even had to get one particular test out of storage!
After about 3 hours the doctor sent me to a room and made me hold ice on my eyes for 5 minutes (ummm, okay, this is kind of weird...and cold). Then there were rulers measuring my eyelids. She called me back into her main office. "I think you have Myasthenia Gravis." I don't remember the rest but lucky I had Katie with me listening.
This appointment would start a battle between my GP and ophthalmologist against my first neurologist who had actually sent my blood away to be tested for Myasthenia Gravis the month before without telling anyone. This blood test had come back negative. As far as she was concerned i did not have Myasthenia Gravis and she refused further testing enraging my GP. He told me that Myasthenia was rare, it was never text book and it does't always show up in blood work. He told me as far as he was concerned I had Myasthenia Gravis, after all every test done in the ophthalmologist's office was indicating this and it explained my symptoms. He also told me to find a new neurologist and the very next day i was seeing one of Sydney's most knowledgable Myasthenia experts.
Through ophthalmological testing and repetitive stimulation nerve studies I finally had a diagnosis; Seronegative Myasthenia Gravis (which I like to refer to as my Ninja MG). Within a month of seeing my new Neurologist i had information about what i was dealing with and was trialing medication.
My GP actually had tears in his eyes the day he read my neurologists letter saying I had a diagnosis. He told me that he hated that i had this disease but was so happy that we knew what was wrong. He also told me that secretly he was kind of excited to be on this journey with me as it was the first case of diagnosed Myasthenia he had seen in all of his years in the profession.
June is Myasthenia Gravis Awareness month.
Thank you for sharing my Myasthenia Gravis (MG) journey with me.
Love, Jessica Yasmin xo
Of course the Disney fanatic in me found comfort in knowing that my hero Mr Walt Disney based one of his loveable dwarfs (from Snow White and the Seven Dwarfs) on his best friend who suffered from Myasthenia Gravis.
Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The name myasthenia gravis, which is Latin and Greek in origin, literally means "grave muscle weakness.
The symptoms of Myasthenia Gravis may include eye muscle weakness, eyelid drooping (ptosis), blurry or double vision(diplopia), unstable gait, a change in facial expression, difficulty in swallowing, shortness of breath, impaired speech, and weakness in the arms, hands, fingers, legs, and neck.
MG affects two to seven out of every 10,000 people in Western countries.
It occurs about one and a half times more often in women than in men.
The disease can appear at any age, but the average age of onset in females is 28; in males, it’s 42.
In about 10 percent of cases, MG begins in childhood