Cervical Dystonia The Difficulty of Diagnosis

Cervical Dystonia is a terrible disease that is often not recognized by physicians. Cervical Dystonia treated by neurologist that are fellowship trained in movement disorders.
The mean age of symptom onset in patients with cervical dystonia is approximately 41 years. However, onset is variable and may range from childhood to old age. Women are more commonly affected by CD than men, in a ratio of 2:1. Disease remissions may occur in about 20% of patients, usually during the first few years. The longer the duration of the patient's disease, the less likely they are to experience a remission.
Due to the variability of associated symptoms and disease severity and the fact that some patients with mild cases of CD may remain undiagnosed, it is difficult to determine the specific frequency of primary dystonia in the general population. However, according to a 1988 study conducted in Rochester, Minnesota, the frequency was estimated to be 29.5 individuals per 100,000 for focal dystonias.

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[ALDL940]

I , too, have felt your "pain"....I have spasmodic dysphonia and now have developed cervical dystonia. I went through many doctors trying to find help and got every dx from acid reflux to anxiety. It wasn't until a speech therapist asked me if any dr. ever mention spasmodic dysphonia. I had never heard of it so she recommended a specialist and finally after 2 years of searching....I am with the right doctor. I am getting Botox injections and it has been a life saver for me! Thx for sharing.

[ROME06MD]

@ALDL940 Great!!! I'm glad to hear it.

[suzanne19651]

hi,just listened to your story and omg its like listening to eveything I went thru!! It took so long to get a diagnosis and once I did it was such a relief, I wasnt goin mad...Thought I was going crazy and nobody able to understand just exactly how I felt and what I was going thru..been diagnosed 5 years now and like you I have the injections which make life pretty much normal for me now, they are a godsend. Thanks so much for sharin your exp, it truly is like hearing myself

myself.

[ROME06MD]

@suzanne19651 These stories should be shared with the National Spasmodic Torticollis Association

[rmcdaniel423]

@ROME06MD I'm confused by the intent of your reply. Are you correcting me, or agreeing with me? Your comment speaks of the need for clinicians to know their limits and refer out judiciously. I agree 100% with you. My comments were about the wisdom of patients doing their own research about the chronic conditions they deal with, regardless of their doctor's accuracy of diagnosis. Whether one has a brilliant doc or an ignorant one, I think a patient ought to try to be informed. Is that wrong?

[ROME06MD]

@rmcdaniel423 I am a Neurologists and I don't believe I would be able to diagnosis AML or ALL, so I would send that to a Hematologist. As physicians you know what you are trained in and should have a good foundation on common disorders on other fields. Movement Disorders is a sub-specialized field where other physicians will know less about. Even general neurologists misdiagnosis Parkinson's disease when it is a look a like.

[ROME06MD]

@Monacyte As a med student myself I thought this as well, however, after residency you will learn that most primary care physicians or physicians in other fields don't much about a lot of areas in Neurology. Even something as common as stroke is not treated correctly by a good number of neurologists let alone primary care physicians.

[ROME06MD]

@borkoboyanov This could be a habit or restless legs. Do you move your legs in bed? Do your legs keep you up at night? Or is this only when you are mentally preoccupied during the day?

[borkoboyanov]

If I jiggle my leg(s) when dealing with a math problem or after sitting for a long time, could this be some sort of dystonia? I catch myself doing this a lot of times, but it seems to be some sort of relieve, I even do it intentionally. I would rather think this has to do more with muscle tone, but could it be actually dystonia?

[rmcdaniel423]

@Monacyte You're right. I totally agree that the doctor(s) should have made a correct diagnosis. However, I still stand by my belief that patients ought to be knowledgeable about their conditions, particularly chronic ones. Researching one's own diagnosis is not "wrong". It's smart. While doctors most certainly bear the ethical responsibility of diagnosing properly (and researching when necessary), patient's shouldn't just blindly trust from a position of total ignorance. Knowledge is power.