Dystonia Neuro Movement Disorder

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Comment by Jenn on April 25, 2009 at 9:41am

technically.. yes I am still in my twenties :P

Comment by beka on April 25, 2009 at 3:07am

For info about blepharospasms , visit online www.blepharospasm.org
Nope,. not going to DC. Have to work !
Are you only in your 20's Jen ?? Super hot 20's something.. Wish I was back in that age range..
Why cant the doc give myobloc for off - the cuff - symptoms- off label uses..? ASK !
Thanks colin for the book suggestions..
Nice wall going here !!
beka

Comment by freida may on April 22, 2009 at 3:08pm

I would like to know a bit about blephlrospasm, my effected side eye has twitched for a month and then it feels like it is drooping, i can not tell if i look at it i can just feel it, does this sound like blesphlrospasm to you, and it is just one eye. if you have input i would appreciate it greatly.

Comment by Jenn on April 22, 2009 at 1:52pm

Is anyone going to Dystonia Advocacy Day May5th/6th in DC? I wanna know who I might meet :P

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Comment by Jenn on April 19, 2009 at 11:56pm

hey twister... I think Im in your facebook group :P Are you in mine? LOL. Yeah writers cramp is no joke.. I suffered from that for over 10 years before, in my mid 20's it spread to the right side of my body. Thanks for making a group for us.. even though I dont know where I belong anymore.. does anyone know of a rightsided dystonic super hot 20 somethings group I can join?

Comment by TwisterG on April 16, 2009 at 11:58pm

Hi All!
Writer’s cramp sufferers please take notice!
Love the forum here and all Bekka is doing for Dystonia. Thanks Bekka!

I don’t want to distract from the bigger picture but if you have a limited task specific dystonia like writer’s cramp I’m inviting you to join us at a facebook group: focal dystonia. This is a link if it helps

http://www.facebook.com/home.php#/group.php?gid=22123433120

I hope as a group (even if it’s just a few of us!) with task specific issues such as but not limited to writers’ cramp we might help each other first, and potentially contribute to the overall cause. If you’re like me when you read about other dystonias you feel like you shouldn’t complain about a small affected area like the hand and/or arm. But hey, it IS a big deal if you are struggling with it. It affects your life and very likely your job too. After several years I’m finally trying Botox and after several treatments I have at last seen a positive result.
I know this is one more group in many, should you join or not? Jump into Facebook too? In the last several years I too have been there, done that. I have absorbed a ton of info trying to find specifics from a few with limited dystonia symptoms. You have to decide. If you decide YES I look forward to meeting you there! Share your story. I sincerely believe we can help each other.
My facebook alias, Twister Ge also known as TwisterG at myspace if you care. You’ll find my real name in my facebook profile and in the group posts there 
G.

Comment by luvslulu on April 15, 2009 at 1:02am

Re: the member who has Blepharospasm and cant get insurance approval for it. I find this totally unacceptable! I think his Dr's have to step up to the plate BIG TIME and help him get the correct authorization. This is INSANE.. which is not new to the insurance companies. They are all INSANE, INCOMPETANT,AND SHAMEFUL!
Good luck with this! Keep us informed on his progress with this authorization!

Comment by CSheldon on April 14, 2009 at 4:24pm

cmf3225:

I use alternative treatment for repetitive thinking and insomnia. A lot tf the symptoms are need for me to control somethng. I can't control my dystonia, I couldn't control the fact that I can no longer work because of it - so I start with the repetitive thinking and not being able to sleep. Fear and other emotions has a lot to do wit it also.
I go to a Healing Center where I have been taught how to identify my emotions and what exercises to do to help quiet the mind. There is a book called Instant Emotional Healing - Acupressure for the Emotions by George J. Pratt, PH.D and Peter T. Lambrou, PH.D. It does work for me! I also have learned to meditate and go once a month for cranial sacral therapy and a therapy called Body Talk (you can look this up on the web for an explanantion). I feel both therapies have helped with my pain as well.

Comment by CSheldon on April 14, 2009 at 4:11pm

I am a dystonia support group leader. One of the members has Blepharospasm and cervical dystonia. He has the anti-bodies for Type A Botox and must use Myobloc. The Myobloc has such side affects that he has elected to use it just for his Blepharospasm and nothing for his cervical dystonia. Using Myobloc in this manner has kept his side affects to a minimum. However, now his health isurance will not cover his shots because they say that Myobloc is only FDA approved for cervical dystonia and not for Blepharospasm. He appealed the decision and lost that appeal. He is appealling again. Has anyone else had this proble? Do you have any advice for him?

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