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By Anonymous January 3, 2010 - 5:39am
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Since August 2008 i've become "handicapped":I walk very slowly and my right leg lifts up like i'm going to kick at something before coming down. I cannot walk more than a few steps before stopping as my leg muscles stiffen. My back starts to hurt and even a cane doesn't help.The more i walk the higher the leg goes and the other leg starts to bother me too. I've been told that its a very rare disorder, no treatment and statistically 90% of patients who start with a lower limb dystonia see it turn into a generalized one. If I walk or stand too much I get the symptoms all over .

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EmpowHER Guest

Thank you for precising the details. It gives me some hope.........i must wait for my next appointment in 6 weeks to talk with my doctor.

January 4, 2010 - 1:54pm

According to the source I provided above (NIH; just click on orange link), provides numerous medications that are available. There is not one recommended type of medication, as it seems like this condition is very individualized and, as such, so is its treatment.

The NIH discusses medication options:
" Medication. Several classes of drugs that may help correct imbalances in neurotransmitters have been found useful. But response to drugs varies among patients and even in the same person over time. The most effective therapy is often individualized, with physicians prescribing several types of drugs at different doses to treat symptoms and produce the fewest side effects."

"Frequently, the first drug administered belongs to a group that reduces the level of the neurotransmitter acetylcholine. Drugs in this group include trihexyphenidyl, benztropine, and procyclidine HCl."

"Drugs that regulate the neurotransmitter GABA may be used in combination with these drugs or alone in patients with mild symptoms. GABA-regulating drugs include the muscle relaxants diazepam, lorazepam, clonazepam, and baclofen."

"Other drugs act on dopamine, a neurotransmitter that helps the brain fine-tune muscle movement. Some drugs which increase dopamine effects include levodopa/carbidopa and bromocriptine. DRD has been remarkably responsive to small doses of this dopamine-boosting treatment. On the other hand, patients have occasionally benefited from drugs that decrease dopamine, such as reserpine or the investigational drug tetrabenazine."

"Anticonvulsants including carbamazepine, usually prescribed to control epilepsy, have occasionally helped individuals with dystonia. "

Have you discussed any of these other medication options with your doctor?

January 3, 2010 - 2:33pm
EmpowHER Guest

I was diagnosed last summer and have been put on amitrrpyline. So far there is not much improvement. My outdoor walking is very limited and when i try to push myself to keep on walking even the other leg starts to bother me too. If you watch this video you will see exactly how much I can walk before i trip on myself and then slow down dramatically.

January 3, 2010 - 9:09am

There is an excellent fact sheet from the National Institute of Health (NIH) on Dystonias, and I'm wondering how long you've been diagnosed with this disorder? Do the doctors know what the cause is (some are hereditary, others are caused by illness or disease, others are "unkown" factors). There are treatments available, including medications. Have the doctors provided you with any information or treatment options?

January 3, 2010 - 8:02am
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