My Eyes are Open Now: Myasthenia
Gravis
by JoAnn Cardenas Enos
I was
diagnosed with myasthenia gravis 22 years ago. My symptoms at
that time were generalized muscle weakness, double vision, droopy
eyelids, difficulty chewing, swallowing, and holding facial expressions,
change in voice, limb weakness, and shortness of breath. Shortly
after I had a thymectomy, it went into a remission. I have had many
flare-ups since my diagnosis, when I went on drug called Mestinon
(pyridostigmine).
Myasthenia gravis was
all very new to me at the time. The name alone scared me. What
was going to happen to me? Where would I go for help? Who would
help me? And why was I always tired? I didn’t know
anything about it. I certainly didn’t know any of the symptoms
or treatments. When I started to do research, I soon discovered that
there was no known cure for myasthenia gravis. So here I was with
so much left to do yet in my life—if I only had the energy.
The hardest part of
having myasthenia gravis was explaining to my family exactly what
I had, what my symptoms were and why I could talk in the morning
yet by late afternoon nobody could understand me. To this day my
children still say, “Mom your eye is drooping.” I
think now they know. After my diagnosis I decided to have the thymectomy.
I really needed something to happen, and I was scared. After the
surgery my symptoms went into remission. What a relief! I was happy
that I decided to have the surgery.
I have since learned a great deal about myasthenia gravis. Thanks
to medical research, there has been remarkable advancement in the
understanding of what myasthenia gravis is and what its symptoms
are (though more research still needs to done). We know now that
the disease is caused by an autoimmune attack directed against the
neuromuscular junction (the link between the thymus gland and the
immune system). (See sidebar below).
Myasthenia gravis has become
a way of life for me now. I am not scared anymore. I now know why
I get tired, and when I do; I try to rest. I would like to add my
thanks to all of the parents and family members who have been in
the forefront helping bring about more awareness regarding myasthenia
gravis. I also thank those who have advocated on my behalf.
About Myasthenia Gravis
Much
has been learned about myasthenia gravis during the past 20 years.
What was once a relatively obscure condition of interest primarily
to neurologists is now the best understood autoimmune disease.
Myasthenia gravis is the most common primary disorder of neuromuscular
transmission. The usual cause is an acquired immunological abnormality,
but some cases result from genetic abnormalities at the neuromuscular
junction. A wide range of potentially effective treatments are available.
There are approximately 36,000 cases of myasthenia gravis in the
United States. However, it is probably underdiagnosed, and its frequency
is probably higher. Early studies showed that women were more often
affected than men; more recent data suggest the opposite. The most
common age at onset is the teens and twenties for women and the 60s
and 70s in men. As the population ages, the average age at onset
has increased. Now males are more often affected than females, and
the onset of symptoms is usually after age 50.
Patients with myasthenia gravis come to the physician complaining
of specific muscle weakness and not of generalized fatigue. Ocular
motor disturbances (eye issues) are the initial symptom of myasthenia
gravis in two-thirds of patients. Difficulty chewing, swallowing,
or talking is the initial symptom in one-sixth of patients, and limb
weakness presents in about 10% of cases.
Source: James F. Howard, Jr., M.D. Department of Neurology, The
University of North Carolina at Chapel Hill www.myasthenia.org
