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home : lifestyle : health   May 25, 2016

10/11/2012 11:09:00 AM
Nerve disease has no known cause


Tamara Abbey
Mendota Bureau Chief



MENDOTA — It was the little things at first, having trouble climbing stairs, a weakness in her arms that disappeared when she rested.
But then it would happen again. Eventually, she was starting to fall and visits to the emergency room were becoming a little too routine for Bethany Burke of Mendota.
“The doctors sent me to a couple of different neurologists,” she said about her trips to the ER back in 2009. “One of the neurologists thought it was just weakness so she sent me to a physical therapist.”
While working with a physical therapist to develop more strength in her limbs, the therapist asked her about a droopy eye. Burke said she never really noticed before, but it was enough for the therapist to suggest she be tested for myasthenia gravis.
Burke, 25, had a special blood test done and three weeks later she learned the therapist had been right to suspect MG.
MG, literally “grave muscle weakness” when translated from the Latin and Greek, can strike at any age and doesn’t discriminate between men, women or children. According to the Mayo Clinic statistics do show a slightly greater risk of diagnosis in women under 40 and men over 60.
Since her diagnosis, Burke has become friends with Tracy Shackelford of Bolingbrook who was diagnosed in 2006. Shackelford has seen a dramatic change in her life since developing MG. The worst has been leaning on her daughter and husband for support while giving up many of the activities she once enjoyed as a mother.
“Once I was diagnosed and began treatment, I had to avoid the school because of my suppressed immune system,” Shackelford wrote. “I know it was hard for my daughter when I said I couldn’t go to the school for all her events, but it was difficult for me as well.”
She also struggles with routine tasks and had to do the interview by e-mail since even her voice isn’t strong enough for more than brief conversations.
“It is hard to admit, but I often need help with basic things from simple household chores to caring for myself,” she wrote. “Sometimes I need my daughter’s help washing or drying my hair or carrying things up or down the stairs.”
Even worse, there is no cure. Burke is managing her symptoms but at a very high cost. She takes several medications regularly and currently goes to the Mayo Clinic for monthly immune globulin therapy at a cost of $10,000 per treatment.
“I’ve been having them once a month for a few months,” she said. “It’s not really a long-term solution.”
The monthly treatments help reduce the muscle weakness that plagued her during the first few months of the disease. Now an inside sales representative for a local company, she knows of others with MG who can not work at all because of their symptoms.
MG can be difficult to diagnose which only complicates the ability to receive treatment. Her mother, Cathy Burke, said MG is known as the “snowflake” disease.
“It never affects people in the same way,” she said. “The problem is it goes misdiagnosed all the time.”
Awareness of the disease does help others recognize symptoms according to a spokesman with the Myasthenia Gravis Foundation of America Inc. A recent walk in Naperville included a local team supporting Bethany and MG research. She raised money from individuals and also received support from First United Methodist Church in Mendota. Several fundraisers sponsored by the church split the proceeds between MG and church missions.
The local team quickly raised beyond their initial goals and had nearly $6,000 pledged prior to the Sept. 29 walk. The Naperville walk was the first one in Illinois and it out-performed all initial expectations. Cathy said about 250 people participated and raised more than the $30,000 goal which had been revised from $25,000.
Shackelford was one of those at the walk despite her symptoms.
“The MG Walk exceeded my expectations in that it was the largest turnout so far of all the U.S. walks,” she said. “I was also moved by the outpouring of support for everyone who suffers from this disease.”
The participation also gave Bethany hope for raising awareness and additional research funds.
“I’m hoping it gets bigger and bigger,” she said. “Then more people will know more about it. It’s always nice and reassuring that people do care and do want to support this.”
Bethany had never heard of the disease before her therapist suggested she be tested. Now she worries there could be others suffering symptoms but unaware of treatments.
“Sometimes it takes years for people to get diagnosed,” she said. “It can affect your breathing so you could be in the hospital with respiratory failure and not know it’s MG.”
At this time, there is no definite cause for developing MG and there is no cure. MG affects people by interfering with nerve receptors in the body due to an antibody that attacks the receptors and prevents the muscles from contracting. The inability to control muscles leads to weakness and possibly respiratory distress in some people.
While there is no cure, MG can be treated with varying effectiveness with anticholinesterase agents to allow acetylcholine to reach nerve receptors. Other treatments include corticosteroids and immune depressants to block the antibodies.
Those treatments have been moderately successful for Bethany, but her course of treatment is cost-prohibitive. Shortly after participating in the MG walk, she traveled to the Mayo Clinic for a thymectomy which is in the third stage of trials. The procedure involves removing the thymus, an organ in her chest, which is suspected of producing the antibodies that are depressing the nerve receptors.
“It’s not conclusive; it’s not a proven fact,” she said about the surgery. “The doctors there feel like it’s a good move. I’ve tried getting off the immune globulin treatments but went back to where I couldn’t walk again.”
While the surgery be a developing method of treatment, Bethany hopes it will reduce the need for medications now, while she’s still young, and also reduce the chances of more severe symptoms as she ages.
For more information about MG, or how you can help, visit http://www.myasthenia.org.












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