6 -- I Have Heard of Myasthenia Gravis / A MEMORY STIRS
June 25, 2018
“I suspect that you have Myasthenia Gravis.”
Dr. Eric Marom, my Primary Care Physician at Midlands Internal Medicine in Columbia, SC, looked straight
into my eyes as he said the words, and I allowed them to sink into my brain and
settle down.
We were back at his office bright and early that Monday
morning. He had asked me to come in for
an additional blood draw, and now he was explaining what he was looking
for.
He went on to tell David and me that this was a relatively
rare autoimmune disease of the neuromuscular system. Myasthenia Gravis (MG) shows up as a
significant weakness of the voluntary skeletal muscles, which are responsible
for the breathing and moving parts of the body.
The name itself means “grave or serious muscle weakness.” Often, a person’s first symptom is a droopy
eye, but I did not have that particular symptom.
I actually had heard of Myasthenia Gravis before. I recalled as a young teen seeing a photo in
the newspaper of our former First Lady Jackie Kennedy, with her then-new
husband, Aristotle Onassis. In the
photo, his eyelids were held up with tape.
My teenage brain thought, “What on earth does a glamorous lovely woman
like Jackie want with an old man who has to tape his eyes open?” I read the article and learned his eyes
drooped because he had Myasthenia Gravis.
This is a true testament to the random crap that resides in my brain!
This is a true testament to the random crap that resides in my brain!
Dr. Marom went on to say that while MG is incurable, it is
manageable. The most dangerous aspect of
it occurs when the diaphragm muscles are affected, because that affects
breathing. He cautioned us that if I had
any significant changes in my breathing to go straight to the hospital. So we left his office with at least something
to research to try to shed light on what was going on with my body. I will add -- he called us at home later that evening, just to check on me. He has gone "above and beyond" in making sure the care I receive is top-notch. It is a great reassurance and comfort to know that my Primary Care Doctor truly does CARE, and listens, and wants to be sure I get the best treatment possible.
David threw himself into researching. He spent days at the computer, reading,
making notes, finding things to help me.
He began organizing folders, jotting down questions, looking for support
groups, looking for specialists. I think
he did enough research that he could easily write a thesis about the
disease! He ordered some supplies to
make my life more bearable: a soft neck
brace to help me hold my head upright and steady, a squeezable respirator, a
slender silver bracelet stamped with “MG WARRIOR” for me. He became my greatest advocate in this
battle.
As for me…. I did some research as well. But my mind would only absorb so much before
I would feel totally overwhelmed and I’d slam the computer shut. This was a major, life-altering event. I’ve always been fairly energetic, juggling
several projects at a time, the queen of multi-tasking, the chatty sister. Up until my knee replacement surgery last
year, I had been walking 5 miles a day for several years, keeping track with a
FitBit. What I was reading indicated
that I was going to have to slow WAY down, pare down my activities
significantly. I – no, WE – were going
to have to find a “New Normal.” I was
confused, I was scared.
Still, research is a good thing. We learned that MG is sometimes called a
“Snowflake Disease” because it differs so much from person to person. One person’s set of symptoms may be completely
different from another’s. It can vary in
severity from day to day. It can be
totally debilitating – or go into a complete remission. The type of treatment that works on one
individual may or may not work on another person.
As we both researched and compared findings we realized that
there had been things happening that were subtle hints that this was coming on,
things that were happening before the double vision or head droop hit me. Things that were so minor, you wouldn’t even
think of seeing a doctor. For example:
- For months, I had awakened most mornings with a very slight, mild headache. As soon as I was upright and moving, it would disappear. I just thought it was seasonal allergies.
- My voice would become raspy at times. My friend who stands near me at church had noticed my singing voice would come and go. I attributed it to my asthma inhaler medication (and stopped singing so loudly haha).
- My tongue felt strange sometimes. (This is hard to describe.) It wouldn’t cooperate, or move, as I intended it when I was trying to chew, or speak. It felt sort of like when you’ve had a shot of novocaine, and it had not *quite* completely worn off. My words would come out a little slurred or just plain mispronounced. I couldn’t figure out what to blame that on. It was just random, maybe I was tired?
- I would have to stop mid-task sometimes and just lie down because my back felt tired. It did not hurt, exactly, I just would suddenly feel tired. There were some seasonal chores that I avoided altogether in the past couple of years because I just never could get the energy collected to start working on them. I reasoned that, well, I’m not as young as I used to be.
Some research indicates that there could have been a
“trigger event” that caused the cascade of symptoms. Something may have stressed me out, for
example. We thought back across the
past few months, noting when my energy level had dropped.
- Most recently, we had had some family turmoil that created stress for David more than me. I do my best to keep things level and cool for David, who has PTSD. I had not felt particularly stressed out, though when the episode was settled we both just spent about a week “vegetating” to unwind. It was as though we were mentally and emotionally wrung out.
- A year ago, I had knee replacement surgery. I had never quite “bounced back” completely from that surgery. Prior to that I walked every day, but since the surgery I had not gotten back into my early morning 3-5 mile routine.
- Two years ago, I had what I called “The Mystery Virus From Hell” that pretty much knocked me off my feet about 6 weeks. I had gone to the doctor a few times with that ailment, been tested for mononucleosis, but nothing specific ever showed up. It was just a virus that had to run its course, but it certainly lingered a lot longer than most viruses I've had. I realized that I had slowed my walking pace after that, finding it difficult to keep up with my girlfriends that walked with me every morning. That was when my housekeeping routines began to take more time as well.
But I wondered if this autoimmune mystery had been lurking
in my body my entire life. Autoimmune
ailments tend to be related, and I had been visited (possessed?) by one
before. When I was about 4 years old, I
had Pauciarticular Juvenile Rheumatoid Arthritis. I recall that my knees would become hot and
swollen; my parents took me to a wonderful doctor in Charlotte. Eventually, I outgrew it by age 7; it returned for a
quick flash when I was about 10, then vanished.
Or did it just morph into Myasthenia Gravis?
We will never really know.
WANT TO KNOW MORE ABOUT MYASTHENIA GRAVIS?
Check out these links:
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Untethered Time Travel: A MEMORY STIRS
I am 4 or 5 years old in 1960/61.
I get out of bed one morning and my knee hurts. It feels hot, and when I try to walk, I limp. My daddy says I should walk "Heel-toe. Heel-toe." I try but I can't because it hurts too much.
My parents take me to several different doctors (or so it seemed to me).
One day, we meet Dr. John Powers. He had a really short haircut and wore a white coat. He makes me giggle! He pressed his hands against my knee and said, "That feels really hot, doesn't it? It hurts, I bet. Let's see if I can help."
He sprays my knee with something that feels icy cold -- BRR! Then he sticks a needle into the side of my knee -- I am scared and I want to cry. But Dr. Powers says I am strong and brave. Before I know it, he drains some stuff off of my knee. It is a strange color. Then he wraps up my knee, and helps me off the table.
He is right, my knee feels better and I can walk Heel-Toe again!
I will visit Dr. Powers many times during my childhood and youth.
He always helps me, and always makes me laugh in the face of pain.
I am 4 or 5 years old in 1960/61.
I get out of bed one morning and my knee hurts. It feels hot, and when I try to walk, I limp. My daddy says I should walk "Heel-toe. Heel-toe." I try but I can't because it hurts too much.
My parents take me to several different doctors (or so it seemed to me).
One day, we meet Dr. John Powers. He had a really short haircut and wore a white coat. He makes me giggle! He pressed his hands against my knee and said, "That feels really hot, doesn't it? It hurts, I bet. Let's see if I can help."
He sprays my knee with something that feels icy cold -- BRR! Then he sticks a needle into the side of my knee -- I am scared and I want to cry. But Dr. Powers says I am strong and brave. Before I know it, he drains some stuff off of my knee. It is a strange color. Then he wraps up my knee, and helps me off the table.
He is right, my knee feels better and I can walk Heel-Toe again!
I will visit Dr. Powers many times during my childhood and youth.
He always helps me, and always makes me laugh in the face of pain.
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