From Dystonia-foundation.org: “Dystonia (disorder) is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are competing for control of the body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures.”
The most common form of dystonia is believed to be caused by a mutation in the GTP-CH1 gene. Otherwise dystonia is a symptom of some other, underlying disease that needs treatment.
There are many forms of this horrific condition and it is a major symptom of dozens of other diseases. It may affect the whole body in general, or it can localize to a single area of the body. There are an estimated 300,000 people affected in North America and it affects people of every age, sex, race and income bracket. There’s current research going on, but cause and cure of this disease are still mysteries.
Dystonia does not impact cognition or intelligence and has no affect on life span. But, when it occurs as a symptom of another disease these things can occur.
Different Types of Dystonia
Dystonia is most commonly a symptom of dozens of conditions, and if that condition is treated successfully, the dystonia goes away. Here are some of the ways dystonia can affect a person:
- Hemidystonia: The affected area is all on one side of the body and is always secondary.
- Idiopathic dystonia: This term was once frequently used for dystonia that was deemed genetic. Now it’s used to identify cases where no cause fan be determined.
- Inherited dystonia is passed from ancestor or parent to a child.
- Familial dystonia affects many members of the extended family.
- Cranial dystonia affects only the muscles in the neck and above.
- Cervical dystonia is when the disease focuses on the neck and shoulder muscles.
- Blepharospasm dystonia: Focal dystonia that affects the muscles of the eyelid and brow.
- Axial dystonia affects the midline of the body (chest abdominal and back muscles).
- Laryngeal dystonia affects the throat muscles and makes the voice raspy, or hoarse and at times it cuts out altogether leaving a whisper sound.
- Respiratory dystonia affects the throat’s muscles that facilitate breathing, instead of the voice muscles. It results in difficulty breathing and loud, gasping sounds that are unavoidable.
Approaches to Dystonia Treatment
The approach to treatment of dystonia is a three-pronged tool:
- oral medications
- injections directly into the muscles
- surgery
Physical therapy may also play a role in some patients’ treatment, almost always as supplemental to the other therapies.
There are currently no known treatments that can reverse the course of primary dystonia. Often symptoms can be managed well with a combination of therapies.
Support and advocacy organizations are important resources for individuals with dystonia. Newsletters, group meetings and Internet-based discussion groups offer opportunities for sharing of information, exchanging psychological support and becoming involved in promoting research on dystonia and its treatments.
One Promising Treatment of Spasmodic Dystonia
One form of treatment is one that most are familiar with: Botulinum toxin injections. Botulinum toxin is a protein made by clostridium botulinum (food poisoning bacteria) that stops muscle spasms. Muscle spasms are caused by chemical messages sent to the muscles through nerves. These messages tell the muscle to contract, or tighten up. Botulinum toxin blocks these messages, therefore stopping the muscle contractions.
Since botulinum toxin is made by the same bacterium that causes food poisoning, a high dose can be fatal, as food poisoning can be fatal. However, the dose given in the injections is so small that even with several shots, the patient shouldn’t be affected from the toxin. A doctor may choose to use the toxin for dystonia treatment, especially if focused dystonia is cranial, or in the head and neck muscles.
The toxin is usually mixed with saline (salt water) and injected directly into the affected muscle with tiny needles. A patient may need five to 10 injections per treatment.
Side Effects of Botulinum Toxin
There are various side effects to botulinum toxin injections. The injection site may be sore, especially if several shots are given at once. This is easily treated with acetaminophen or ibuprofen, or by using an ice pack to the sore part.
The patient may experience weak muscles, which is temporary and goes completely away. Muscle soreness that affects the entire body may occur, as well as difficulty in swallowing. A red rash could appear and last for several days after the shot, easing as time goes by.
It’s recommended that a person who suspects they may have this condition talk to their doctor, who will want to take some tests, and a specialist is likely to be recommended. But don’t despair; with modern technologies, medicines and therapies today, there are things they can do to alleviate the symptoms as much as possible, so the patient can lead a normal life.
Sources:
- WeMove.org, no author or publish date listed, pages 1&2 (accessed June 16, 2010)
- Dystonia.org, no author or publish date listed, page 1, (accessed June 16, 2010)
- FamilyDoctor.org, no author or publish date listed, page 1, (accessed June 16, 2010)
- DystoniaFoundation.org, no author or publish date listed, page 1, (accessed June 16, 2010)
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