LAURINBURG – Denise Milligan is looking forward to going to the ballfield to watch her six-year-old son Aston play baseball, but she doesn’t know when she will be able to do that.
Milligan is unsure because she is slowly recovering from a bout with Guillain-Barré Syndrome.
The rare disorder affects one in 100,000 people, according to the National Institutes of Health. The syndrome attacks the peripheral nervous system, and doctors do not know exactly what causes it.
Milligan was generally in good health before she was stricken with the illness. Her only major health concern was some intestinal bleeding from a medical procedure in mid-April.
After the surgery, Denise woke up to “a pins and needles” sensation in her feet and hands. Like many people she discounted the feeling attributing it to fasting before the procedure.
Milligan’s mother Shelia tried to get her daughter to go to the hospital, but Milligan wanted to wait and see if she got better on her own.
On April 27 she woke up unable to control her body.
“I could no longer walk,” Milligan said. “I fell straight to the floor like everything was Jell-O,” Milligan said.
Milligan’s family helped her to the car and rushed her to Scotland Memorial Hospital.
Doctors at Scotland Memorial thought Milligan might be having a bad reaction to medication.
While she was at Scotland Memorial awaiting an answer, the numbness and lack of control began to migrate to the upper regions of her body.
“That Sunday at Scotland Memorial, one doctor came in and told me, ‘don’t quote me on this, but I think you may have Guillain-Barré, but I’m just taking an educated guess” Milligan said.
By Sunday, the syndrome began to affect her lungs.
Her body’s involuntary ability to breathe was shutting down, and she was transferred to Carolina’s Medical Center Charlotte.
“They gave me an IVIG [an immunotherapy treatment]; I started to be able to breathe again,” Milligan recalls. “And about a week later I started to walk with a walker.”
When she was able to take some steps with assistance, Milligan was transferred to the physical rehabilitation unit at Carolina’s Medical Center where she learned to feed, bathe and dress herself, brush her hair and teeth, walk and write again. She still experiences the constant tingling sensation in her feet and hands.
“I’m on that journey now to be able to walk by myself,” Milligan said joking that she looks like a Weeble toy when she tries to walk unassisted. “But the biggest thing I am working on right now is being able to write again. I’m using what they use with the pre-K kids, how they trace the letters and all that.”
She has developed two blood clots from her extended time in bed, is on blood thinners and may have to remain on them for the rest of her life.
Also uncertain is whether or not Milligan will ever work again, she had recently begun a job with Smithfield Packaging in Tarheel North Carolina, but was let go because she was had only been on the job two weeks before she fell ill.
She is back at home in Laurinburg and has begun a round of visits to doctors and physical therapy.
Shelia Milligan, is happy to have her daughter home but said the ordeal has been hard because her daughter was two hours away in Charlotte.
“One day we came and she was trying to feed herself and she couldn’t do it on her own. She was so frustrated she was about ready to throw the tray,” Shelia Milligan said. “She was crying, and I started crying because of her frustration. You expect you to go through stuff like that, not your children.”
Shelia worries about her daughter’s future.
“We’re unsure of everything,” Shelia Milligan said. “She was working in a factory, and we don’t know if she will ever be able to do that type of work again.”
Milligan’s family had to learn physical therapy exercises to do at home help her regain her strength.
Denise Milligan wants people to be cautious and not dismiss the warning signs like she did.
“I want people to know and be careful and look out for the symptoms because if you don’t catch it in time it will be worse and they could lose their life,” she said. “Be careful and get help right away.”
Guillain-Barré Syndrome is not contagious. It is more common among older adults, and people over 50 are at a higher risk of developing the condition, according to the Centers for Disease Control.
Guillain-Barré syndrome causes the body’s immune system to attack part of the peripheral nervous system.
The early symptoms are “varying degrees of weakness or tingling sensations in the legs. In many instances the symmetrical weakness and abnormal sensations spread to the arms and upper body,” according to the CDC website.
Symptoms can grow in intensity until muscles do not work at all. Severe cases can lead to near complete paralysis.
“In these cases the disorder is life threatening – potentially interfering with breathing and, at times, with blood pressure or heart rate – and is considered a medical emergency,” according to the website.
Symptoms can progress as quickly as hours or as slowly as weeks.
Recovery can be as short as a few weeks or as long as three years.
Guillain-Barré Syndrome has been linked to patients who have had “symptoms of a respiratory or gastrointestinal viral infection.”
Sometimes surgery has proven to be a trigger for the syndrome.
Some countries have shown an increase of Guillain-Barré Syndrome in patients who have had a Zika Virus infection.
Some flu vaccines have been linked to the condition as well.
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