My Life with Myasthenia Gravis
Last updated: October 2022
As best as I remember, my symptoms started around age 10. My first symptom was difficulty using my hands and fingers along with extreme constipation.
It was to the point that my teachers required me to use a typewriter as I could not hold on to pens or pencils. After a few words, my handwriting would get really sloppy. This would come and go.
As a child and still now, I cannot tap my fingers or feet, or bob my head to music more than a few beats without getting "worn out," then having to rest for a while.
Trouble at the eye doctor
During eye exams I couldn't look in the different directions without having pain and feeling like my eyes are "stiff." I had to work very hard to get my eyes to move and then hold it for the exam.
I would have flashes of double vision and cross-eye while moving my eyes. At times I had to shut them and start over.
Now, being 10 years old, I told the ophthalmologist that it hurt and I thought he would listen. Instead, he yelled at me to stop, saying that it didn’t hurt and I just didn’t want to follow directions. Every year we would go through this, even after becoming an adult.
I could not and still cannot swim. The pressure on my ribs and diaphragm is too much, along with trouble turning my head and breathing while trying to swim. I can get a couple strokes in before I am exhausted and have to stop.
At the age of 25 after the birth of my second child, I developed breathing problems that would come and go. Then my left leg and right arm gave out. At this point I was told I probably had multiple sclerosis (MS).
Coping with misdiagnoses
Around the age of 32, I starting having trouble holding on to things, along with internal and external tremors. At this point, a neurologist diagnosed me with Parkinson’s disease.
But after a bad reaction to the medication for Parkinson’s, he decided that it was an incorrect diagnosis.
Instead, he then wanted me to have what he called a "controversial brain surgery" to see if they could figure out what was going on with me. That did not happen!
Total body weakness
Around the age of 40, I started going having flares of all my symptoms. They lasted anywhere from a month or 2, to a few years. But now it was not just my left leg and right arm - my whole body would just give out, especially with any use.
Along with chewing and swallowing issues, eye problems like sagging, double vision and cross-eyes on a daily basis, I starting having urinary issues. These were diagnosed by a urologist as neurogenic bladder because of the undiagnosed neurological problem.
The total body weakness would get over whelming. At times I would need walker or wheelchairs. Food was pureed so I could eat.
A clinical diagnosis
Even after testing negative for MS, I was still told by doctors that that is what I had. I was not given treatment for MS because there was no proof. But, I was given medication to treat the symptoms. Most medications seemed to make things worse. Eventually, I did go into a remission for almost 10 years with no medication for any kind.
After this long journey, I was clinically diagnosed with myasthenia gravis. I am seronegative and have had negative single-fiber electromyography and repetitive nerve stimulation.
Despite these negative tests, I have all the symptoms of myasthenia gravis and I am responding well to Mestinon, prednisone and CellCept.
How helpful is following a daily routine for managing your MG?
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