Cervical dystonia is rare, persistent neck spasm

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DEAR DR. ROACH: I have a friend in his early 50s who has always been healthy. He has just been diagnosed with cervical dystonia. His head bobbles. He has had Botox shots, but these did not help. It started with feeling a stiff neck. He has had numerous tests and an MRI, but no one has a solution. Do you have any ideas? — D.M.

ANSWER: Cervical dystonia is a rare condition of involuntary contraction of neck muscles to one side. It is similar to torticollis, another muscle spasm in the neck, but unlike torticollis, which gets better over a few days to two weeks, cervical dystonia persists. It can happen at any age, but is most frequent in middle age. It is painful, and although there are treatments, there isn’t a cure. Nobody knows what causes it.

Injection of Botox helps, in many cases. The “bobbles” of the head you noticed can be akin to the tremors seen in Parkinson’s disease, and medicines for Parkinson’s sometimes are helpful in cervical dystonia. Surgery and deep-brain stimulation have been tried with some success, but require special expertise.

The Dystonia Medical Research Foundation has much helpful information. You can contact the organization on the Web at www.dystonia-foundation.org or by calling toll-free 800-377-DYST.

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DEAR DR. ROACH: I am 56 years old and was diagnosed with progressive multiple sclerosis 10 years ago. My symptoms are the common ones, but I also have non-epileptic fits. These began five years ago, lasted a short while and then stopped. Eight months ago, they returned, and have worsened, with no relief. The MS physicians have no answers for this and have speculated that it might be “conversion disorder.” Medications they have prescribed have not eased the situation.

What can you tell me about this disorder? Please give me your thoughts and suggestions, which I so desperately need. — D.B.

ANSWER: Multiple sclerosis is a very difficult disease to live with. The symptoms of MS, including the pronounced fatigue, weakness, loss of motor control and bowel and bladder changes, are very hard on the patient and cause both physical and psychological stress.

The theory of conversion disorder is that this psychological stress manifests itself in physical symptoms. These are most commonly neurologic, such as blindness, paralysis, numbness and fits. In the case of fits, the way to be sure these are not epileptic seizures is to perform an EEG and simultaneously have a video camera running during one of the fits. It is very important to stress that these symptoms are real, and not “made up” by the patient. They cannot be turned on and off at will. Because conversion symptoms closely resemble neurologic diseases, physicians frequently both overdiagnose and underdiagnose conversion disorder.

Conversion disorder can be hard to treat. Usually a combination of medications and psychotherapy is tried. The fact that you also have MS makes treatment more complex, and ideally you would have a neurologist and psychiatrist working together to help relieve these symptoms. Accepting that these serious physical symptoms can be attributed to psychological causes is key to success, but it can be hard for many people.

Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.cornell.edu or request an order form of available health newsletters at P.O. Box 536475, Orlando, FL 32853-6475. Health newsletters may be ordered from www.rbmamall.com.

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