The University of Nebraska Medical Center is hosting the largest study ever done on a rare movement disorder.
It’s a debilitating disorder that causes people to feel like they are going to fall down when they are standing.
It’s called primary orthostatic tremor (OT), and this week the UNMC is hosting 50 OT patients from around the world in what is the largest study ever done with OT patients.
“It’s a very rare condition, so it’s quite an achievement to get 50 patients to congregate in Omaha,” said Diego Torres-Russotto, M.D., a movement disorders specialist at UNMC. “OT is a miserable disease. Hopefully, this study will help us come up with some answers for these people.”
Dr. Torres-Russotto, who is an assistant professor in neurological sciences, said patients came from Spain, England, Canada, Panama, Australia and the United States.
Thursday and Friday, the patients each undergo a two-hour physical examination by a movement disorder specialist and a physical therapist. The goal of the study is to determine if the patients really do have postural instability and to assess the presence of ataxia (lack of voluntary coordination of muscle movements).
The research team includes: John Bertoni, M.D., Ph.D., professor of neurological sciences, and Danish Bhatti, M.D., a movement disorders fellow.
Dr. Torres-Russotto said the study would not be possible without collaborators from The Nebraska Medical Center Physical and Occupational Therapy Department, Jen McKune, Lori Schmaderer and Katie Blacketer, and the Movement Disorders case managers – Cindy Penke, Sheila Heithoff and Bobbi Roeder.
OT is characterized by high frequency tremors of the legs when in a standing position and an immediate sense of instability. Because of the speed of the contractions, OT is often not recognized as a tremor when compared to essential tremor or Parkinson’s disease.
Dr. Torres-Russotto said OT is greatly under diagnosed and often misdiagnosed as other neurological problems such as Parkinson’s, essential tremor or psychogenic problems.
“People with OT do not typically complain of tremors,” he said. “Their biggest problem is the sudden disabling event that occurs when they stand. They feel extreme unsteadiness and imbalance in both legs. They can only stand for a short period of time, in some cases only seconds. There is a feeling of panic. They need to sit down or start walking to relieve their symptoms.”
OT is a repeating cycle that happens all through the day, he said. It is life changing and unrelenting.
“It is an incapacitating disorder,” Dr. Torres-Russotto said. “It impacts your life in just about every way imaginable and makes routine tasks such as going to church, standing in line at the grocery checkout, even going to the bathroom a major challenge.”
Some other facts about OT include:
- It is more common in females.
- There’s usually a 10-15 year lag between onset of symptoms and final diagnosis.
- Onset typically occurs around age 40.
- It won’t kill you, but it typically gets worse over time.
- Diagnosis is confirmed through electromyography, or EMG, a test that measures the electrical activity of muscles.
- By touching something, the feeling of falling improves.
The UNMC study is blinded, Dr. Torres-Russotto said, as half the participants have OT and the other half have no balance issues.
He hopes the study will lead to further research and treatment options. He said a second meeting is already being planned for 2013 in Omaha, as more people want to enroll.
For more information on OT click on the link below.
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