An 害羞草研究所渆pisode at work害羞草研究所� is how Robyn Cook describes the sudden and life-changing full-body spasm that sent her to the emergency room, five years before a mysterious set of symptoms would be diagnosed as stiff person syndrome.

害羞草研究所淚 couldn害羞草研究所檛 open my mouth because my jaw was spasming,害羞草研究所� she said of the frightening experience in 2012 that prevented her from calling for help from her desk at a bank.

害羞草研究所淢y left arm was stuck to me and my body was spasming from the neck, the shoulder, the torso, trunk, even into the hips,害羞草研究所� Cook said from North Bay, Ont.

Cook, now 46, says signs of the neurological autoimmune disease began when she was 23. Her back stiffened with pain that took her to the floor and a similar debilitating incident eight years later forced her to stop working for five months.

害羞草研究所淭hese episodes kept happening where it害羞草研究所檚 like, 害羞草研究所極h, my back went out. I害羞草研究所檓 stuck. I can害羞草研究所檛 move. I害羞草研究所檓 hitting the floor and crawling back to bed. But nobody could say anything was wrong with me.害羞草研究所�

Cook ended up in the ER about 25 times, each time fearing she害羞草研究所檇 be perceived as a pill-seeker concocting her symptoms because the illness was little-known in Canada and had no advocacy group to support patients.

害羞草研究所淚t was the feeling of not being believed because you are the frequent flyer,害羞草研究所� she said.

Symptoms worsened after the 2012 episode at work and Cook increasingly felt isolated. She worried about falling and began using a cane with a four-prong base at home in 2015. The following year she became dependent on a wheelchair whenever she left the house.

害羞草研究所淲hen I was having my worst spasms I was in bed. They would usually come on when I was sleeping. It was kind of like 害羞草研究所楾he Exorcist害羞草研究所� 害羞草研究所� the back-arching spasms that would levitate your back,害羞草研究所� she said, referring to the 1973 horror film about a demonic possession.

Cook害羞草研究所檚 family doctor suspected fibromyalgia and referred her to a rheumatologist who quickly ruled out the condition, which causes bodily pain but without the rigidity and muscle spasms. He sent her to a physiatrist, a specialist in physical medicine and rehabilitation.

After a year of treatment that included intravenous ketamine and Botox injections to help manage muscle spasms, the physiatrist considered the possibility of a rare disease that involved her brain and immune system.

害羞草研究所淗e was actually the first one who said, 害羞草研究所楨ver heard of stiff person syndrome?害羞草研究所� I said, 害羞草研究所楴o, that sounds ridiculous.害羞草研究所櫤π卟菅芯克鶟

It wouldn害羞草研究所檛 be until 2022 that stiff person syndrome would gain global attention as the affliction that forced megastar C茅line Dion to cancel concerts due to her own debilitating symptoms. Dion has said in a series of recent interviews that, like many patients, she spent years seeking a diagnosis and turned to painkillers to manage pain and spasms.

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As she became sicker, Cook said she was taking 120 mgs of daily Valium, painkillers and muscle relaxants, leaving her with only one option months after her diagnosis in 2017: a risky experimental treatment that involved collecting stem cells from her bone marrow, eliminating her immune system with chemotherapy and then transplanting those stem cells to regenerate her immune system. The best case scenario was that it would halt progression of the disease, which has no cure.

Cook said her stem cell transplant involved an extremely challenging recovery but has 害羞草研究所済iven me my life back.害羞草研究所�

She was the fifth patient to have the procedure at the Ottawa Hospital Research Institute since 2009.

Dr. Harold Atkins, the institute害羞草研究所檚 senior clinical investigator, said seven Canadians 害羞草研究所� five women and two men 害羞草研究所� have received the procedure, which he described as an 害羞草研究所渆nd of the line害羞草研究所� option that can put the disease in remission.

害羞草研究所淪ome people are free of symptoms and medications and for others the disease has come back again, but not as severe and it害羞草研究所檚 easier to treat,害羞草研究所� he said.

Atkins, a stem cell transplant physician, said he does not know of any neurologist in Canada who specializes in stiff person syndrome. The transplant procedure is reserved for 害羞草研究所渢he very few people who have severe enough symptoms and no response to other treatments.害羞草研究所�

害羞草研究所淲e害羞草研究所檙e very selective because there are significant risks associated with stem cell transplant,害羞草研究所� said Atkins, also an associate professor at the University of Ottawa.

A similar procedure is sometimes used for cancer patients including those with lymphoma and myeloma, said Atkins.

His team害羞草研究所檚 efforts resulted in the first reported study of the stem cell transplant in two patients with stiff person syndrome, Atkins said. It was published in the medical journal JAMA Neurology in 2014.

The patients included a woman treated in 2009, five years after being diagnosed at age 48, and another who had it in 2011 following her diagnosis three years earlier at age 30.

The first person was fully mobile again six months later and the second resumed her previous activities without any symptoms a year later, the study says.

Atkins said he knows of at least nine transplant cases in the United States.

Dion has said Colorado neurologist Dr. Amanda Piquet diagnosed and treated her, and the singer害羞草研究所檚 foundation has donated $2 million over five years to UCHealth University of Colorado Hospital for research into autoimmune diseases including stiff person syndrome.

In a release issued last week by the University of Colorado Anschutz Medical Campus, Piquet said the cash will expand research to diagnose the disease earlier for those who 害羞草研究所渆nd up on this diagnostic odyssey.害羞草研究所�

害羞草研究所淭here is a lot of anxiety and phobias that we can see with this disease. I害羞草研究所檝e had some patients work with a trauma therapist,害羞草研究所� Piquet said of a condition she estimates strikes two in 100,000 people, not one in a million as previously believed.

Dr. Marinos Dalakas, director of the neuromuscular division at Thomas Jefferson University in Philadelphia, said he has been studying stiff person syndrome for about 30 years and currently has nearly 100 patients, some from other countries, including Canada.

Stem cell transplants have produced mixed results but only a small number of studies with a few patients have been done in the United States, he said.

Dalakas said that since Dion revealed she has stiff person syndrome, some patients have become wrongly convinced that they too are afflicted, while others who were misdiagnosed are also emerging

Overall, increased awareness could mean more funding for clinical trials leading to better treatment, he said.

Nearly two years ago Cook returned to full-time work as branch manager of a credit union. She still has regular physiotherapy and chiropractic treatment and continues to take medications including Valium, which she has tapered to 10 mg daily.

However, Cook said she spent at least $100,000 on travel and hotels for appointments in various cities in Canada, including Ottawa where costs included rent and personal aides during 100 days of her recovery.

She still has mild spasms that 害羞草研究所渢he average person would find painful,害羞草研究所� though they do not disrupt her daily activities.

Cook sees several specialists including a neurologist, urologist, dermatologist, rheumatologist and psychiatrist for the trauma of the transplant. She also continues to have followup appointments with Atkins.

She hopes increased attention to stiff person syndrome will bring more support to patients, many of whom have relatively few options beyond managing their pain.

害羞草研究所淭he average person with stiff person syndrome is suffering because of a lack of resources.害羞草研究所�

-Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.

Camille Bains, The Canadian Press