Aiken’s spouse lives with Uncommon Neurological Issues, Native Well being Information

Meghan Bayer has always been active in her life.

She played soccer and college basketball in high school and has been doing taekwondo since middle school. A cursory glance at her would reveal that she looks like a pretty typical woman in her 20s.

However, Bayer’s medical history is far from typical.

Bayer was diagnosed with a rare neurological disorder called stiff person syndrome. This disorder is so rare that only one in a million people has been diagnosed with it. It affects the central nervous system and can cause muscle stiffness and severe muscle spasms.

Especially for Bayer, it can affect their muscles from head to toe at any time.

“It can almost pucker my face, it can cramp my eyelids, it can cramp my jaw, my tongue can cramp,” Bayer said.

The history of her diagnosis spans seven years. It started on August 24, 2012 when Bayer received an HPV vaccine that was required for college. She said she felt sick that night with flu-like symptoms that would not go away.

A few weeks later, Bayer said her occupational therapist noticed that her back and muscles were tight. Those cramps were chalked to stress when Bayer was in high school in her junior year.

She justified the pain and symptoms until February 2013 when she started developing nerve pain all over her body. It was later discovered that the pain was caused by a condition called Complex Regional Pain Syndrome, a broad term used to describe excessive and persistent pain and inflammation.

Around this time Bayer noticed that her right foot was spinning and she could no longer walk on it. Her doctor viewed it as originating from the CRPS and treated it as such from February 2013 to June 2014.

Bayer’s doctor grew increasingly suspicious that something else was going on in her body, and she was being treated for SPS, high-dose benzodiazepines.

“These are doses that are beyond what men can probably take two to three times what I can,” Bayer said. “Three hundred pound men would be dead if they took these drugs. And yet I took them and used them.”

Even so, Bayer continued to be told that this was all in her head and was the result of anxiety or stress.

On May 12, 2016, Bayer had a fit between 30 and 32 hours while sleeping and was in a coma for 10 days. After she woke up, her contractures relaxed for about six months before they returned.

At one point, Bayer knew that something was wrong with her and that she had to look for answers. She began making appointments with neurologists in several states and ended up dating Dr. Scott Newsome at the Johns Hopkins Stiff Person Syndrome Center in Baltimore.

He agreed to take her case in September 2018 as he believed it was a possible SPS case. After blood tests and other tests, Newsome concluded that Bayer did indeed have SPS.

“My case is unique in that I got it when I was 16, not 36,” said Bayer, since the disease usually occurs between the ages of 30 and 60. “Doctors don’t understand. It’s a If that is so, from their textbooks. When they take me to the hospital or clinic, they say,” There’s no way. “It’s impossible for them.

As for treatment, Bayer conducts chemotherapy every five months and a subcutaneous immunoglobulin infusion in their home once a week. She takes high-dose benzodiazepines and muscle relaxants every day. She also has huge metal brackets that she can wear on her legs. She said her cramps had broken before.

Bayer founded a nonprofit, Meg’s Miracles, to raise funds and awareness about SPS research Newsome is doing in its laboratory in Baltimore. She continues to do competitive taekwondo and plans to attend graduate school to become a social worker. She graduated from the University of Pittsburgh in 2019 with a communications degree.

“I’m determined to be one of those people who will go out there and find out how it works,” said Bayer.

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