Though others may disagree with me, I can only tell you what is true for me. And you do need a Neurologist trained in Movement Disorders. I went from one medical big wig to another at a completely differnt hospital. For this gal, it has been slowly progressive. I went from 3 yrs ago feeling like I had been cut in half with my right side aching to freezing feet, and severe cramps in mjy legs to now spasms in my back, and throat. I hate it most in my throat. I saw my Neuro yesterday and asked him if I had General Dystonia, yes, he answered. Driving I often get severe cramping in my feet and now, shooting down my spine. I of course hide it from my husband because I don't want him to worry, but it takes me breath away sometimes. It makes me so tired also.
Some meds help alot but do have unpleasant side effects; urine retention, weight gain, very drowsy more then not.

YOu need support and the web, this site and wego have been such a blessing for me. Hang in there...

You deal with it sometimes one hour at a time and some days are really long. Life has not ended but changed. I am still dealing with changes and acceptance all the time.

Don't give up, Deanna.

Thanks, Deanna! At least I know now that I am not crazy! Your words of encouragement meant the world to me. Hope to get to know you better.

Now to find a Neuro who can help you! Nobody in my family has had it either. Look up the doctors near you and go from there. Rest and don't feel guilty when you are tired. Take care of you. Hard to do for me.
have a good day!

Dear Deanna - so, may I ask, is there a time frame for progression? Does it at some point level off or leave? I'm at the web site www.wemove.org and I am watching the
Dystonia Overview www.wemove.org/dys/dys.html
which is me to a t as well as the
Essential Tremor Overview www.wemove.org/et/et.html
which also fits me. I know that I have 5 other relatives (blood) that do this lovely hula dance thing.

I live so far back in God's country my neuro is 1 1/2 hrs away and he freaked the first time he saw me go full blown. ROFLOL I shook so hard I lost an earring, then I stutter and finally I lose speech. Sometimes I shake 20 mins, sometime 1 hr and 35 mins. No way to gauge it.

Are there things that "set it off"? Lord knows I'd avoid them like the plague! LOL I do know bad weather or weather changes like hot to cold or dry to wet as well as stress or a sudden scare.

How long have you had to deal with this, may I ask? And when or can I expect the progression to stop? Right now it's my whole body and when it hits I can't walk or stand if I am sitting.

Thanks a ton.....

I have dystonia in my left leg. I see a neurologist who specialist in treating dystonia. But it took a year of seeing local neuro's who couldn't diagnose it. I have been getting botox injections every 3 months for the past 3 years. It doesn't get rid of all the movement but it lessens the strength. He also said stress is the biggest factor that will make it worse.

OK, so now I need to move to a remote island and just lay on the beach. Wonder if the doc will write a script for that as medically necessary for the "stress" reduction? LOL Yeah, found out the hard way stress is like being hit by lightening.