Meghan Bayer has at all times been lively in her life.
She performed soccer and varsity basketball in highschool and has accomplished taekwondo since center faculty. A cursory look at her would present that she seems to be like a reasonably typical lady in her 20s.
Nevertheless, Bayer’s medical historical past is something however typical.
Bayer was recognized with a uncommon neurological dysfunction known as Stiff Particular person Syndrome. This dysfunction is so uncommon just one out of each million individuals has been recognized with it. It impacts the central nervous system and may trigger muscle rigidity and extreme muscle spasms.
Particularly to Bayer, it may have an effect on her muscle tissues from head to toe at any time.
“It might make my face nearly contort, it may make my eyelids spasm shut, it may make my jaw spasm shut, my tongue can spasm,” Bayer stated.
The story of her analysis spans over seven years. It began on Aug. 24, 2012, when Bayer bought an HPV vaccine, which was a requirement to go to school. She stated she was feeling sick that evening, with flu-like signs that would not go away.
A couple of weeks later, Bayer stated her occupational therapist observed that her again and muscle tissues have been in spasm. These spasms have been chalked as much as stress, as Bayer was in her junior 12 months of highschool.
She continued to justify the ache and signs till February 2013 when she started growing a nerve ache all through her physique. In a while, it was found the ache was from a situation known as Advanced Regional Ache Syndrome, which is a broad time period describing extreme and extended ache and irritation.
Round this time, Bayer observed that her proper foot was handing over and she or he may now not stroll on it. Her physician noticed it as stemming from the CRPS and handled it as such from February 2013 till June 2014.
Bayer’s physician was turning into more and more suspicious that one thing else was afoot in her physique and she or he was placed on the therapy for SPS, which is high-dose benzodiazepines.
“These are doses past what males most likely two to a few occasions my dimension can take,” Bayer stated. “Three-hundred-pound males can be lifeless in the event that they took these medicines. And but, I used to be taking them and performing on them.”
Regardless of this, Bayer continued to be informed this was all in her head and was the results of nervousness or stress.
On Could 12, 2016, Bayer, in her sleep, began to have between a 30-32 hour seizure and was in a coma for 10 days. After she awoke, her contractures relaxed for round six months earlier than returning.
At a sure level, Bayer knew there was one thing incorrect along with her and knew she needed to search out solutions. She began making appointments with neurologists in a number of states, and finally related with Dr. Scott Newsome on the Johns Hopkins Stiff Particular person Syndrome Middle in Baltimore.
He agreed to take her case in September 2018, believing it was a potential case of SPS. After working blood checks and different examinations, Newsome concluded Bayer did certainly have SPS.
“My case, particularly, is exclusive in that I bought it when i used to be 16, not 36,” Bayer stated, because the illness is often developed between the ages of 30 and 60. “Medical doctors don’t perceive it. It’s a line, if that, out of their textbooks. After they get me within the hospital, or in clinic, they’re like, ‘there’s no method.’ It’s an unimaginable factor to them.”
By way of therapy, Bayer does a spherical of chemotherapy each 5 months and a subcutaneous immunoglobulin infusion as soon as every week at her residence. Each day, she takes excessive dose benzodiazepines and muscle relaxers. She additionally has big metallic braces she will put on on her legs, which she stated her spasms have damaged earlier than.
Bayer has began a nonprofit, Meg’s Miracles, to lift funds and consciousness for SPS analysis that Newsome is conducting at his Baltimore lab. She continues to do aggressive taekwondo and plans to attend graduate faculty to change into a social employee. She graduated from the College of Pittsburgh in 2019 with a communications diploma.
“I’m decided to be a kind of people who goes on the market and figures out the best way to make it work,” stated Bayer.