Merilyn Jonaitis
Patient finds instant relief at Shands Jacksonville Neuropathy Center
Twelve years ago, Merilyn Jonaitis began experiencing moderate numbness in her fingertips and a loss of sensation in the palms of her hands. She first noticed symptoms of neuropathy in late 1997, but ignored them.
"If I had an M&M in the palm of my hand I couldn't feel it there," Jonaitis said. "Then I noticed unsteadiness while walking."
The condition progressed and eventually forced critical care nurse of 21 years to retire. When Jonaitis could no longer walk the halls of a Massachusetts hospital where she worked, she scheduled an appointment with a neurologist.
Her diagnosis and treatment
In the spring of 1998 she was diagnosed with neuropathy. Neuropathy is a nerve disease that afflicts hundreds of thousands of Floridians and more than 20 million Americans. This progressive disease primarily affects the hands and feet, causing tingling, numbness, weakness and pain. Other symptoms associated with it may include muscle weakness, cramps and spasms; in addition to loss of balance and coordination as in Jonaitis' case.
The next step for Jonaitis' physician was finding the proper medication to treat her condition. Her physician turned to clinical trials, chemotherapy and intravenous immune globulin or IVIG. The IVIG treatment worked.
She refers to IVIG as liquid gold because of its hefty price tag and how it gives her the freedom to move around and enjoy her children and grandchildren. However, without treatment every five weeks, she becomes completely immobile.
"When I get to Shands, I can no longer walk on my own and have to use the assistance of my husband or hold onto the backs of chairs for support," said the 72 year old, describing the debilitating nature of the disease.
"It costs almost a $500,000 a year for me to receive my treatments," Jonaitis said. "Thank goodness I have good insurance."
Top-quality care in her own backyard
In early 2003, Jonaitis and her husband of 53 years relocated to Jacksonville, Fla. to be closer to their daughters and to help her better cope with her condition during the winter months. For almost a year, she flew back and forth to Massachusetts to receive her IVIG treatment.
Then her physician referred her to a local neurologist with whom he had attended medical school - Alan Berger, MD, a University of Florida College of Medicine - Jacksonville professor and chair of neurology.
Berger specializes in the treatment of various neurological conditions, including neuropathy. He also oversees the Shands Jacksonville Neuropathy Center. The center is home to one of only 12 neuropathy centers in the U.S. offering comprehensive diagnosis, treatment, support and education for various neurological conditions.
"I have treated many patients with this condition, and I am very familiar with its symptoms and the IVIG treatment," Berger said.
Every five weeks, Jonaitis takes a short drive to the Shands Jacksonville Infusion Center for her two-day, six-hour IVIG treatment and no longer has to endure long flights.
She is convinced that she would either be wheelchair-bound or dead if not for IVIG and neuropathy centers like the one at Shands Jacksonville.
"I'm grateful for Dr. Berger and everyone at Shands," Jonaitis said. "There is no way to measure how grateful I truly am to get my treatments right here at home."
top of page
|
