Dystonia Neuro Movement Disorder

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Comment by Mo on October 2, 2009 at 11:31am

ty lene. as you can see. still just you who has replied. if dr young thinks i have ystonia he said gamma knife doesnt work as well for dystonia, dbs does. the head shaking sucks. 26 years of this madness and it goes to other body parts of mine with triggers. there is a great vid on gamma knife by dr. young and team. two actually. let me know if you are interested in them and i will email them here to u.

Comment by Lene on October 2, 2009 at 1:02am

DISTOWEB: How do u get a tape of this that you are speaking about?

Comment by Lene on October 2, 2009 at 12:52am

Sorry Mo don't feel isolated. I have cervical dystonia with tremor. I certainly understand the head tremor movement because I hate it.!! I do not know anything about gamma knife although would be interested in learning more about it. DBS is not an option on the table..It kinds scares me.
Lots of times I post something and get know reply and wonder why,,,,???
I then out of know where will get a flood of e-mails so don't worry someone that has the knowledge will type back.

We in the central part of the US had no electricity tonight. It just came back on.

Storms are playing havic......Be patient we are here for you..Lene

Comment by Mo on October 1, 2009 at 9:09pm

wow not one damn response? i am appalled. unbelievable how much i give to each group i have belonged to (and some for many years) and what little response i get in return. only contributes to more isolation and depression this disease continues to #%#%#$ gift to me!

Comment by Mo on October 1, 2009 at 6:11pm

Hello All,

I haven't posted in quite sometime but an update on me.... I have seen about 10 movement docs. Half say ET the other half say different Cervical Dystonia or Dystonia diagnosis. I have the hardest time wrapping my brain around the dystonia diagnosis for I don't have most to nearly all of the symptoms.

I will be seeing Dr. Young October 15th for: assessment, questions and answers, diagnosis and beyond medication treatment. If he diag's me with essential tremor, then I will have gamma knife as an option. If I am diagnosed with some form of Dystonia, Gamma Knife is off the table and DBS may be the only option. I wanted DBS for quite sometimes thinking Gamma Knife was not an option to me. I do NOT want DBS and want these damn tremors to stop!

Wish me luck that my diagnosis is ET. For 27 years I have been waiting for this for no neuro, specialist etc. that I have gone to would offer anything beyond drugs that don't work to well for me.

I honestly think all these years I have had ET and not dystonia. I have done tons of research on different tremors and types and the symptoms that fall under ET and Dystonia. Why would any doc diagnose me with dystonia when I typically only suffer from the shaking? I don't have twisting, contorting, abnormal posturing, freezing, etc.

Mo

Comment by Distoweb on October 1, 2009 at 4:29pm

New interesting VISUAL tool in the physiotherapeutic advice area (II)

Dear friends.

Three weeks ago I introduce you a new option to get helped and learn in the physiotherapeutic area, now more intuitive than ever, at the url:

http://webs.ono.com/distoweb [no banners, no ads, no earnings]

 button ‘Physiotherapist advice’

There you can get some useful advice about:

Spasticity, stiffness, spasms
Muscular and joints pain
Depression, anxiety, stress
Blepharospasm
Cervical dystonia
Oromandibular dystonia
Spasmodic dysphonia
Writer’s cramp
Parkinson’s
Essential tremor

and the following videos:

Visual yoga (for blepharospasm)
Relaxing breathing (for stress and anxiety)
Cervical auto-stretching (for spasmodic torticollis)

In just three weeks, these videos have reached 429 views (221 in English and 208 in Spanish) with numerous samples of appreciation and use.

In a few weeks, and given their usefulness, we will try new support videos.

We have received some requests on symptomatology associated with Parkinson's.

Please, we expect more suggestions!
Take care,

Fernando
Valencia-Spain

Comment by beka on October 1, 2009 at 12:53pm

"You must do the things you think you cannot do "
E. Roosevelt

Comment by beka on September 28, 2009 at 9:38am

If at first you don't succeed, find out if the loser gets anything."

Anonymous

Comment by beka on September 28, 2009 at 9:20am

“The right train of thought can take you to a better station in life.”

Anonymous

Comment by TJD on September 23, 2009 at 9:08pm

Am I going about this right. My gen prac doc is a super nice and sweet guy he has stuck with me for over a year and done referrals for tests on anything and everything. There is no movement special neurologist in my area that I can find at all so I asked that he look into doing the testing for genetic forms of dystonia. Confused him. Didn't know there was a way of testing for it. By the way he shared his Dad is a genetics specialist. So he called Dad and figured out as much as he could and found out that yes, there are tests they can do but he said it is very complicated need to know what kind of dystonia it is first. Over twenty different kinds they say that are genetic. He'll send me to a genetic specialist and work on getting me tested but am I doing this backwards. Should I travel to a movement specialist somewhere get a guessed diagnosis and then do genetic testing for verification. I am so confused. ugggggghhhhhh!

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