Thursday, June 24, 1999
Myasthenia gravis patients form support group
By DIRK FILLPOT
Staff Writer
If her doctors had been correct, Hawley resident Carole Carnes
would not be alive today.
Carnes was diagnosed with Lou Gehrig's disease in 1995 and
was given three years to live. It was later determined she had
myasthenia gravis, an autoimmune neuromuscular disorder.
The disease is difficult to diagnose because its symptoms vary,
she said.
"I think I had it for a long time and didn't know,"
Carnes said. "I just thought I was clumsy."
The disease weakens muscles, caused by a block in the normal
communications between nerves and muscles, according to the Mayo
Clinic. The weakening occurs when the body's immune system goes
awry and produces antibodies that impair receptor function.
Carnes said she would lose strength in her arms after doing
everyday chores. The disease also paralyzed her vocal cords, altering
her voice. She takes medication to lessen the symptoms, she said.
Muscle weakness associated with the disorder increases with
continued activity and generally improves after rest, according
to the Myasthenia Gravis Foundation of America. MG usually first
affects muscles that control eyelids, chewing, swallowing, coughing
and facial expressions.
Lajuana Miller is an exception to the rule.
MG first attacked Miller's arms and legs, at times leaving
her stranded in her front yard unable to muster enough strength
to walk back into her house, she said.
She didn't have droopy eyes, which are usually an indication
someone has MG. Tests to detect the disorder indicated she was
normal, Miller said. Tests can fail to identify the disorder in
about a quarter of MG patients, she said.
Some doctors told her the problems she experienced were a figment
of her imagination. Miller said she was relieved to know what
was happening to her body, Miller said.
"It's hard to deal with something if you don't know what
it is," she said.
Symptoms of MG include drooping eyelids, double vision, difficulty
chewing, difficulty swallowing, difficulty breathing, and leg
and arm weakness.
MG is treatable. Miller and Carnes received thymectomies, the
surgical removal of the thyroid gland. That gland produces the
antibodies that cause MG.
Medications are available to help treat MG. There is no cure
for the disorder, according to the MGFA.
"MG is very treatable," Miller said. "No one
should die from MG, but people could die from it."
MGFA estimates 14 of 100,000 people have MG.
Miller helped organize a support group for people with MG.
The group will meet Saturday at 11:30 a.m. at Zentner's Daughter
Steak House, located at 4358 Sayles Blvd.
Carnes and Miller met for the first time recently. Miller said
it's good to talk about her experiences with another person suffering
from MG.
"It just means the world to know there's someone to talk
to," she said. "It helped me so much that when I got
better, I wanted to be there for other people because others have
been there for me."
For more information about the North West Texas Chapter of
the MGFA, which is organizing the Saturday support group meeting,
call Miller at 554-7038.
Dirk Fillpot can be reached at 676-6738 or fillpotd@abinews.com
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Abilene Reporter-News / Texnews / E.W. Scripps Publications
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