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Re: Dopa-responsive Dystonia

Posted by pixel8mbb on July 25, 2020, at 15:24:55

In reply to Re: Dopa-responsive Dystonia pixel8mbb, posted by linkadge on July 24, 2020, at 19:44:37

Hi again, forgot to include the dystonic muscular symptoms, since you might want to know those too. These vary among people and there are other symptoms, some more severe, these are mine.

As a child odd gait, that's what doctors call it. I had a hard time walking in a straight line, sometimes compensated with a springy walk, amusing my classmates. Later, walking gingerly, toe-walking.

Couldnt walk on a balance bar or do a pullup. Very sore muscles after exercises, even missed school once. Throughout life frequent falls, stumble easily, drop things. I got used to people laughing at me for these, or sort of!

Severe muscle cramps in feet, toes become distorted and hard to get back to normal. Also leg cramps, and writer's cramp in the days when we used to write a lot. Toes curling, a known symptom, when sitting. Also leg bouncing, not sure if this is a symptom or just me.

Dystonia can affect the muscles in the neck, including the vocal chords, and Ive always had an extremely soft speaking voice, sent to speech therapist age 6. Also frequent choking, when eating or just swallowing wrong. Can become very short of breath when talking while walking, talking becomes too effortful. Have esophageal reflux/spastic esophagus.

Since I was young, pain when twisting torso. Hula hoop was popular but had to give it up. Could not tolerate pain from doing the Twist. Took exercise classes involving abdominal twisting and afterwards experienced abdominal muscle popping out painfully, thought it must be a hernia but was not.

I believe these are pretty much all things considered benign enough by doctors not to worry about. If a lot of people have symptoms like these, and especially if they have psychiatric symptoms as well, it's my opinion, especially since there are treatments, that they are worth looking into. I'm not sure the neurologists I have access to feel that way but fingers crossed.


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