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MG: one day at a time

Posted: Tuesday, Oct 2nd, 2012

In her home salon, the "Shag Shop," Nikki Binker does some hair styling work on Rachel Busmann. Binker has the rare disorder myasthenia gravis, and family and friends are planning a benefit to help with her bills. Photo by John Kubal/Register

• 'Boas & Blessings for Binker' set for Brookings

BROOKINGS – In the United States, myasthenia gravis – MG for short – affects about 20 of every 100,000 people. Nikki Binker of Brookings is one of those 20 people. She has been since October 2008.

In layperson's terms, found on the MG Foundation website, the disease is called "a chronic auto-immune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups." MG can cause muscle weakness, double vision, drooping eylids, speech difficulties such as slurring words, and swallowing and breathing trouble.

In Nikki's instance, it is all of the above.

When the first signs of MG hit her, the now 32-year-old woman tells of working "really long hours at my job, 13-hour days." Mornings she would teach "Strong Women" classes at the Powershop Gym. During the remainder of her day she worked as a hair stylist.

"In the morning I would be fine; then I'd go to work from 8 in the morning until 9 at night," Nikki explained. "By 2 o'clock, I would start having trouble; I would start to slur (my words) and I would kind of have trouble swallowing.

"I didn't really know what was going on; and by the end of the night you couldn't understand me talking. But then I would go to sleep and I would be normal in the morning. That was what was so weird; it's such a different disease."

A nurse practitioner who was also one of her hair-styling clients would check on Nikki, because she was worried about Nikki's condition by the end of the night. But because of the rarity of MG, she didn’t know what Nikki was affected with.

Nikki explained that because of the drooping of the left side of her face and mouth, the NP thought she might have Bell's palsy.

She prescribed steroids, and Nikki was fine for about a month; but then the drooping came back. And by 9 p.m., Nikki was unable to speak at all. When she went to sleep, she had trouble breathing, gasping for air. The time had come to find out what was going on.

Getting a diagnosis

Sean Binker, Nikki's husband, and Sue Ribstein, her mother, drove Nikki to the emergency room at the Sanford USD Medical Center in Sioux Falls. She was admitted and given an MRI that proved inconclusive.

Nikki said she was placed on a high dose of steroids, adding, "By the next week my whole face looked like I had a stroke. And I couldn't breathe at all at night-time."

On Oct. 15, 2008, Sue took her daughter to a neurologist; Nikki said that "he knew right away what it was. He could tell from the drooping eyes and the speech."

After being diagnosed with a disease having a name she couldn't pronounce, Binker got a gloomy prognosis: She "would never work and never work out again in (her) life."

Laughing, Nikki said, "I told them I didn't believe them, of course. I used to work out all the time."

Curt Ribstein, her father, instantly recognized that his daughter had MG, because of the drooping eye and his having friends whose daughter had MG. He recommended Nikki be seen at the Mayo Clinic in Rochester, Minn.

In January 2009, she was seen there and diagnosed with a "tumor that had grown to the size of a golf ball" in her chest. While the tumor was malignant, which Nikki said "was very rare," it was encapsulated and had not spread. It was surgically removed and Nikki did not require radiation or chemotherapy – "they caught everything."

"After the surgery, I actually went into remission for 2 1/2 years," she explained. "And I lived a normal life."

'Back in full force'

Back home in Brookings, Nikki returned to her pre-MG lifestyle. She took no medications; she did take nutritional supplements. She ran a half-marathon (13.1 miles), "exercised all the time and went back to working all the time."

She taught Strong Women classes at the Powershop and styled hair at Ritz. In March 2011, she opened her own salon – the "Shag Shop" – in her home.

Then in October 2011, at the advice of a dermatologist, she had some moles on her back removed. Come December she got an infection, and the MG "came back in full force."

Nikki began again having difficulty swallowing. She called her neurologist and requested that she be put back on medication. He advised that she come in and be seen.

"By that time it had kind of gone into my breathing tube (trachea)," she explained. "So he put me back on medicine and then put me back in the hospital right after the holidays, Christmas 2011."

Nikki could usually eat normally at breakfast and lunch; but by supper she "couldn't swallow at all." There was a one-week period where she estimates that she was eating maybe 200 calories a day. But she continued her hard-working regimen.

Additionally, she began receiving intravenous immunoglobins (IVIGs), which can sometimes affect the function or production of the abnormal antibodies, which play a key role in MG. She seemed OK with that for the first day, but the next day in the evening she felt terrible with an excrutiatingly painful migraine headache that forced her to go to the emergency room at the Brookings hospital.

'Amazing, 100 percent'

A few days later, in January 2012, Nikki returned to the Mayo Clinic, where she underwent a plasma exchange: "They took all the plasma out of my body and put new plasma in. It's a little more intense than the IVIGs."

The treatment was like being reborn. She felt "amazing, 100 percent, like I didn't even have MG again." It lasted six days.

She returned to work but suffered a relapse and took a week off. When she returned to work it was part-time – six hours a day.

That worked for a while; but this past May Nikki began finding it even more difficult to swallow; now she wasn't able to swallow in the morning. And she wasn't sleeping well. People with MG are advised to get plenty of rest.

Laughing heartily, Nikki noted that her doctors aren't real happy with her working so hard. She reluctantly agreed to go on steroids; but a major side effect was acid reflux, which had her coughing much of the night and unable to sleep.

Since May, she has been "getting worse and worse." She has lost 50 pounds. Nikki continued to take medications, some of them as frequently as every three hours. But despite all that she was experiencing, she is not a person prone to complaining. She said neither her mother or husband realized how badly she felt.

However, the first week in September, Sean quit his job, which took him out of town during the week, so he could be with his wife; and he began to realize how serious her health problems were. That same week, he took Nikki to the emergency room when she had an especially severe bout of coughing that left her unable to breathe.

"That's the most scary feeling in the world," she said. After initial treatment there, which followed a consultation with her Sioux Falls neurologist, she went home the next day.

The following day her husband took her to Sioux Falls, where she was hospitalized. She was released a few days ago.

Now she's taking some time off from work and undergoing plasma exchanges. And taking life one day at a time. Now comes a little help from her friends.

Saturday, Oct. 13, is scheduled to be a day of "Boas & Blessings for Binker," to help raise money to cover some of her medical bills. There's a 5K Fun Run/Walk set for 9 a.m., with registration set for 8 to 8:30 a.m. in Larson Park. A free-will donation will be taken. And from 8 to 10 a.m. a silent auction and bake sale will be held at the Larson Wogen Lunchroom.

Monetary donations can be dropped off at BankStar or the Powershop Gym – which will match up to $1,000 in donations. Contact Rachel Busmann at (605) 770-1405 or Amber May at (605) 690-5244.

Contact John Kubal at jkubal@brookingsregister.com.

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