Is Meige Syndrome a form of Dystonia?


Posted by kathy , Nov 29,2001,17:10   Archive
i know this has been covered before, but with it's complex involvement with mouth, neck and other muscles ; is it considered a seperate dystonia from BEB???



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Re: Is Meige Syndrome a form of Dystonia?

Re : Is Meige Syndrome a form of Dystonia? --- kathy
Posted by Carol Brown , Nov 29,2001,17:27 Top of Thread Archive
Hi Kathy,

Yes, Meige Syndrome is a form of dystonia. From what I've read about it, it comes with beb or by itself. I happen to have both together. Thinking back on it, the beb came first, then I started making faces. I didn't know what was happening to me. Also, sometimes the muscles in my neck tighten up. Don't know why I have this, but it's the real pitts for those of us who do.

Carol Brown in Naselle, WA where we have been having a real rain storm for the last couple of days -- even a little snow yesterday.




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Re: Is Meige Syndrome a form of Dystonia?

Re : Re: Is Meige Syndrome a form of Dystonia? --- Carol Brown
Posted by kathy , Nov 30,2001,05:05 Top of Thread Archive
thank you for your reply. the muscles in my neck tighten up also and the facial contortions happen when i am struggling to get my eyes open.



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Re: Is Meige Syndrome a form of Dystonia?

Re : Is Meige Syndrome a form of Dystonia? --- kathy
Posted by Rita Molnar , Nov 29,2001,20:26 Top of Thread Archive
Hi Kathy! I have both Meige and BEB. Both are separate, but in my experience are very related to each other. I find that when the Botox shots for my eyes are working well, the Meige problem seems to lessen. My Meige problem at this point is mostly around my mouth and cheeks, and I'm not receiving shots for that yet, although my doctor is monitoring it closely. My Meige symptoms began sometime before my BEB did. Started with a pulling sensation around my nose next to the cheeks. Later I noticed a pulling at the corner of my mouth, creating something of a frown. It was about a year later when the squinting, eye closing and light sensitivity began. This was a number of years ago, but it was only two years ago when I was able to get a diagnosis. The diagnosis, itself helped a great deal to ease my problem. Right now, I'm 3 weeks away from my next shots, and I'm already starting to bump into walls. Hope I can make it through Christmas without knocking over the tree....Rita (still smiling, despite the frustrations) in New Jersey....



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Re: Is Meige Syndrome a form of Dystonia?

Re : Re: Is Meige Syndrome a form of Dystonia? --- Rita Molnar
Posted by Christel-California , Nov 30,2001,00:08 Top of Thread Archive
Kathy, it's known as focal dystonia vs general dystonia.

Christel in Ca. BEB/MEIGE




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Re: Is Meige Syndrome a form of Dystonia?

Re : Re: Is Meige Syndrome a form of Dystonia? --- Christel-California
Posted by kathy , Nov 30,2001,05:09 Top of Thread Archive
thanks. sometimes i need it put in simple laymen's language.



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Re: Is Meige Syndrome a form of Dystonia?

Re : Re: Is Meige Syndrome a form of Dystonia? --- Rita Molnar
Posted by kathy , Nov 30,2001,05:07 Top of Thread Archive
what in god's name would we do without those walls? wander into space?
i do the same thing.



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Re: Is Meige Syndrome a form of Dystonia?

Re : Is Meige Syndrome a form of Dystonia? --- kathy
Posted by Moderator-JB , Nov 30,2001,01:16 Top of Thread Archive
Kathy:

Meige is actually a combination of the two focal dystonias, BEB and Oromandibular dystonia.

http://www.dystonia-foundation.org/defined/oro.asp

Judy




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Re: Is Meige Syndrome a form of Dystonia?

Re : Re: Is Meige Syndrome a form of Dystonia? --- Moderator-JB
Posted by kathy , Nov 30,2001,05:11 Top of Thread Archive
i know we went over this before but i think now i understand it more.



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Re: Is Meige Syndrome a form of Dystonia?

Re : Is Meige Syndrome a form of Dystonia? --- kathy
Posted by kathy , Dec 02,2001,06:53 Top of Thread Archive
what does it mean that meige syndrome "develops"? progresses?



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Re: Is Meige Syndrome a form of Dystonia?

Re : Re: Is Meige Syndrome a form of Dystonia? --- kathy
Posted by Shirley-Arkansas-USA , Dec 02,2001,09:47 Top of Thread Archive
When one says that you are "developing" Meige, it just means that you are "showing or developing symptoms" of this form of dystonia-which may involve muscle spasms around the eyes, lower face, mouth, tongue, neck and sometimes the respiratory system, any of which may affect the voice. This information came from the latest Blue book (Benign Essential Blepharospasm, Meige and Other Related Disorders from the BEBRF) that was handed out at the 2001 conference. The booklet also states that there is a difference of opinion among physicians on whether Meige is an extension of BEB or a separate syndrome.

"Progression" would just mean that the disorder is affecting areas that weren't affected before or that symptoms have increased or worsened.

Shirley in Arkansas with BEB/Apraxia




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Re: Is Meige Syndrome a form of Dystonia?/shirley

Re : Re: Is Meige Syndrome a form of Dystonia? --- Shirley-Arkansas-USA
Posted by kathy , Dec 03,2001,07:03 Top of Thread Archive
okay, i'll try to be temporarily reassured with this answer.



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