Subject: Re: support for dystonia treatment
Forum: The Neurology and Neurosurgery Forum
Topic Area: Dystonia
Posted by CCF MD mdf on January 13, 1999 at 23:12:51:
In Reply to: support for dystonia treatment posted by rbg on January 13, 1999 at 09:28:36:

my wife is 29 years old house wife, i was married in dec 1992, when my wife was pregnent for 3 months,
i felt abnormal movement in the body, her uppor posture began to go back, and her arms twisted backward.
i contacted to the doctors and they finally diagnosed idiopathic dystonia, started lavidopa and carvidopa,
and tryhexiphenedryl hydrocloride. since last five years we are very much disturbed with this disease
your organization may kindly help us in treardng my wife. we have also two female kids, aged 5 years and
2 years. I can send you full history of patient if could reply me in this regard.

thnking you,

yours faithfully,

rbg

=

The first task is to decide whether your wife has dystonia of any variety. It is certainly possible from the description but there is no substitute for examination in person and a careful listening to the whole story.

Next, if your wife has dystonia, there are many different diseases which produce it. The cause of the dystonia should be identified. Certainly, there are many people who have dystonia with no explanation (idiopathic) but the fact that your wife has been taking levodopa suggests she may have something called "dopa responsive" dystonia. I would also consider dystonia secondary to prior use of certain medications (uncommon). If your wife had Parkinson's Disease, I think your doctors would have said so by now.

If the basic phenomenon (dystonia) and the cause (specific disease) are identified, then the treatment can be reviewed. Trihexiphenidyl (Artane) is useful in some people. Sinemet (carbidopa/levodopa) is useful only in a specific sub-population of patients with dystonia.

BoTox is a treatment option. The abnormally contracting muscles can be partially weakened with local injections of this purified neurotoxin.

I hope this builds a case for you to have your wife's diagnosis and treatment reviewed. It is possible that her doctors are doing everything right, but your best bet is to find out with a second opinion. We have movement disorders specialists here at CCF, if you desire. Or, if travel here is not practical, you should identify a large academic medical center (usually affiliated with a medical school) and contact their department of neurology and ask if they have a movement disorders specialist on staff.

If you desire to call us, you may call 800 223-2273 ext 4-5559, neurology appointments. If you are calling from out of the country, dial 216 444-5559, but also ask about contacting the international office, who can help with travel arrangements.

I hope this helps. CCF MD mdf.

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