checked into dopa responsive dystonia.. ty lindy. i will mention it at the doc appt tomorrow.

Symptoms
DRD typically presents as a dystonic gait disorder that begins in early childhood. The symptoms of DRD may be similar to those of early-onset generalized dystonia, and begin in the legs. Symptoms may appear minor (such as muscle cramps after exercise) or present later in life in a form that more closely resembles Parkinson�s disease. The features of parkinsonism that may occur include slowness of movements, instability or lack of balance, and, less commonly, tremor of the hands at rest.

Symptoms of DRD are often worse later in the day (this phenomenon is called diurnal fluctuation and may increase with exertion.seems to fit what is going on. the thing that worries me are the side effects of botox which is what my neuros nurse said they use for dystonia..

Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are pre-existing before injection. Swallowing problems may last for several months
Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms including: loss of strength and all-over muscle weakness, double vision, blurred vision and drooping eyelids, hoarseness or change or loss of voice (dysphonia), trouble saying words clearly (dysarthria), loss of bladder control, trouble breathing, trouble swallowing

good grief.. another merry go round