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Please visit a Movement Disorder Neurologist - ONLY! That's their expertise...Movement Disorders that cause spasms,pain, pulling and Hell on Earth dealing with Movement Disorders. It's familal and runs in families. You only have to inherit the disease from one parent. They may or may not show symptoms but can pass it on to their children and grandchildren. It's on the DYT1 gene. Botox quit working for me and I now take Myoblock and Klonopin. I've had the Selective Denervation Operation and it helped. You may want to try that. Most of my 10 aunts and uncles suffered from Movement Disorders and my cousins, too. I have Spasmodic Torticollis and oral mandibular tightness. Smiling is a nightmare.This is a monster disease. Plus get a drug list of medications and over the counter supplements NOT TO TAKE!
Replies to "Please visit a Movement Disorder Neurologist - ONLY! That's their expertise...Movement Disorders that cause spasms,pain, pulling..."
My neurologist knows causes are hereditary my grandfather and dad have it. Meds I take do .and he says he'll change the doses if I want to I'm not making any changes to my meds b/c seizures are being controlled. I also take klonopin and do the exercises for hands and fingers
No, never had physiotherapy. They cut the overactive nerves (7) and it'd helped a lot. Of course the nerves regenerate, but I'm so much better after the surgery and it's been 18 years. The best doctor is Dr. Arce of Shands Hospital, in Jacksonville, FL. Not everyone is a candidate, but you may want to give him a call. I only trust my life with Dr. Arce, a great neurosurgeon.
Did you say you have Essential Tremor? My mother's family of ten children all had shakiness in their hands. Also tremors of the oral mandibular area. Plus hyperactivity. Plus my cousins have it too. It only takes one parent to get this Dystonia, and you may not have any symptoms but you're carrying the defective gene and your children can inherit this and on and on.
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@oakbourne
I appreciate your posting about your disorder and I am sorry to hear of the many problems you have experienced. You certainly provided some helpful information. In reading a bit about the Selective Denervation Operation I see that it is often followed up by physiotherapy? Did you have that as well?
I look forward to hearing from you again.
Teresa