MISDIAGNOSED
Imagine that you live in a small town and everyone knows who you are. Imagine all your life you thought you had cerebral palsy. However, you know cerebral palsy is not supposed to worsen.
Imagine you suddenly become worse; your walking and your speech becomes worse.
Imagine that your head throbs and your eyes feel as if someone is stabbing and punching them.
Imagine you are sent to a neurologist, and just by looking at you, he says, “You have dystonia; you can look it up and read about dystonia online.”
Dystonia and cerebral palsy are movement disorders.
Several family doctors in the London, Ky. area never heard of dystonia.
Knowing you have one disease is bad, but being misdiagnosed is worse. There are thousands of diagnosed people every year that may be misdiagnosed with cerebral palsy.
Many people may be misdiagnosed with cerebral palsy, Tourette’s syndrome, Downs syndrome, or autism, when they have a condition called dystonia. Dystonia condition mimics many of these diseases, according to the Web site of the Southern Rivers Special Needs Association.
Dystonia worsens with stress or sleeplessness, Dr. Alam Kahn said. A neurologist located in London.
Some people may have more than one disease.
More than half a million people have been diagnosed or have cerebral palsy, according to the Web site of the NIDS & United Cerebral Palsy publication.
Many doctors do not want to do the research and cerebral palsy is an easy condition to diagnose.
If you have been diagnosed with cerebral palsy, Tourette’s syndrome, or Downs syndrome, you may have been misdiagnosed.
“Go to google.com and look up dystonia,” Kahn said.
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You may be surprised by what you find out about dystonia.
There are several types of dystonia. One type is primary focal dystonia, and under this there are six subtypes. There is also generalized and segmental dystonia, and under this there are three subtypes, according to the Web site of the Southern Rivers Special Needs Association.
Dystonia has a lot the characteristics of cerebral palsy.
“The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination, but don’t worsen over time,” according to the Web site of the Southern Rivers Special Needs Association.
It is really all in the brain.
However, dystonia can worsen over period of time.
“Dystonia can be corrected with Deep Brain Stimulation,” Kahn said.
“If something called stiminet does not work the next step is Deep Brain Stimulation,” according to the Web site of the Dystonia Medical Research Foundation.
If you feel that you have been misdiagnosed or want to be sure your diagnosis is the correct one, you may need to go to your doctor and request a full evaluation. Some doctors want to oblige their patients and give them what they want.
Medical science has come a long way, but still corrections are needed. Nothing is 100 percent, said local family doctor.
Just imagine you have all the symptoms of dystonia and cerebral palsy. How would you feel knowing you have some kind of problem, but not knowing what it was?
Just imagine that you are waiting for the call to see if Deep Brain Stimulation will help you. Imagine how excited you would feel at the possibility of being “normal.”
Joshua Robinson
~ JOSHUATIME THE NO GAMES ZONE