Dystonia - can anyone help?

[WAIN]

Does anyone suffer from Dystonia ?  I would like to share symptons
also , we are awaiting and EEG and an ENG test to confirm diagnosis, does anyone know what an ENG test is and how this would confirm DYSTONIA?

[22685]

I have been a sufferer of Dystonia ( Torticollis ) for the past 26 years , It took 11years to be Diagosed... I had no EEG OR ENG test to confirm i was suffering with Dystonia .
My head kept turning on it`s own to the right, luckly enough i got the right neurologist who new what he was looking for .There are different types of Dystonia ..
Blepharospasm - Affects the muscles of the eye.
Cervical Dystonia - Affects the neck muscles.
Laryngeal Dystonia - Affects the vocal cords
Myoclonus Dystonia - Jerking movements
Hand/Arm Dystonia - Tremors that cause difficulty writing.
Paroxysmal Dystonia - A group of rare conditions where Dystonia affects the whole part of the body.
Oromandibular Dystonia - Affecting the muscles that move the mouth , tongue and jaw.
I hope this helps.

[BhumikaMD]

Hi,

In dystonia, muscles contract involuntarily — causing an uncontrollable twisting of the affected body part. Symptoms can be mild or severe, and often interfere with the performance of many day-to-day tasks.

You could read more about the condition at the following links -

en.wikipedia.org/wiki/Dystonia

and

http://www.mayoclinic.com/health/dystonia/DS00684

Electrical sensors (EMG) inserted into affected muscle groups, while painful, can provide a definitive diagnosis by showing pulsating nerve signals being transmitted to the muscles even when they are at rest.

Let us know if you need any further information.

Regards.

[Twisted959]

I was diagnosed with Cervical Dystonia on April 29/08 by a neurologist.  No tests have been done todate.  I am awaiting an MRI and have been informed that my options are, and I quote:  "Live with it or try Botox"  Today I have been informed that I have an 18 -24 month wait before a Dr who does medical botox will see me.  I have been in alot of pain and this Dystonia has very negatively affected my life, I am unable to cook, clean, exercise, cut the lawn, garden, - any of the everyday activities that most people can do.  The medical community has not been very helpful and it has taken over 18 months to get this diagnosis.  I have been searching for answers on my own, and at my own expense, since most of the treatments are not covered by any medical plans.  I have tried chiropractic, accupunctture, physiotherapy, I.M.S., deep tissue massage, freezing at the base of my skull, chinese herbal products, homeopathic remedies, topical creams, prescription drugs, anti-inflamatories, magnets, heat therapy, ice therapy, and sacral cranial therapy; all to no avail.   It has been suggested that I seek medical assistance in the U.S.or another country.  If anyone has any information about treatments in other countries I would be interested in hearing from you.

[alison1972]

im also under investigation for Paroxysmal .its so severe its seizure like.for the first 12 months they fobbed me off with pyschological until a doctor witnessed it.im now seeing a consultant movement disorder specialist.

[Marika68]

Hi there,

I've lived with Cervical Dystonia for approx. 15 years, also having hand tremors which was noticed approx. 4 years ago..neuro tells me that some people with CD develop them also.

I am treated with 3 vials of Botox A every 3 months as I refuse to take oral medications...Advil helps with some of my pain also and sleeping with a good pillow. :)

2 weeks ago I had neck surgery as the Dystonia ( from movement/twisting) caused disc degeneration. Not to scare anyone, but Dystonia is not fun to live with :) I am sure you all know that :)

I've tried everything you can think of as well even a Holistic approach with no success. The Botox has helped me substancially and am Praying that the surgery will diminish my pain levels by 75 %.

If you have any questions please don't hesitate to ask :) We are all here for the same reason, help and support :)

Keep smiling, take care and have an awesome day :) Bye for now.