Re: face draws up
>a spasm that started in my left eye that felt terrible but it then went down the left side even my mouth twisted.<Check this out with your Dr., but that sounds like it might be Meige Syndrome. If so, the Dr. probably will have to ammend your injection points to include the muscles of the cheek and lower face. You must be miserable. I'm so sorry. --- Lynn
Re: face draws up
Lynn, guess scared me with the spasm but has not happen so strongly since. I do get a week pull every so often in my cheek but ever so slight, What is meige ?
Thanks for answer. In Seattle cool and without rain this morning
Re: face draws up
Hi Mary -- Maybe I can answer your post. Meige Syndrome involves the muscles in the face, mouth and sometimes the neck. Of course it is a form of dystonia. Sometimes it comes with beb, sometimes alone. I was diagnosed with beb/meige both at the same time, so I get injections at different muscles in the face. Check with your doc when you go in. When my doc injects me in the face, I make darn sure he doesn't hit my smile muscles. You may want to do the same. The first time my doc injected my face, he did hit the smile muscles. The result was a droopy face which made me look like I was frowning all the time. It was awful let me tell you. Now when I go in, I say "Watch out for my smile!".Hope I helped some. Good luck. Carol Brown in Naselle, WA Rainey and dreary too!
Re: face draws up
Mary & Carol,
I have been having spasm for awhile now. My Neruo has just sent me to another Neuro that gives the botox injections. Bleph, and hemi facial has been mentioned, but no Meinge. My questiong is that this second doc said I have Bleph but I too have the pulling down of the mouth. It wouldn't really effect my smile because my mouth is pulled downward most of the time anyway. I did tell him how it pulls in my neck to, but he blew it off and said maybe i just thought it did. Well I know it does!! I haven't read to much on Meinge though how is it diagnosed? Is it just by obeservation as well. All i Know is that right now i would love to just pull my face off literally. Somedays its really painfull others I can tolerate it, today isn't one of those days. Thanks for all the information sorry we all couldn't be finding new friends under different circumstances, like a party or something lol.
Teresa
Florida, Sunny, hot 80 waiting for some cold...too feel like Christmas
Re: face draws up
Hi TeresaNo, your doc should not just "blow it off". Does he think it's all in your mind or what? Well, I have the same thing where I get this pulling on my neck -- kind of feels that someone has a hold of the cord on the side of my neck and is pulling on it. It gets painful, but it also doesn't last either. Sometimes it also radiates to the back of my neck and shoulders. I am positive ir is all related. The neuroligist who first diagnosed me, said it was meige syndrome, and told me this only from observation. One time, I was having spasms in my neck and back and told my doc about it. He injected me in the back of the neck and I couldn't bend over for a week. It scared me to death, so I won't let him touch me there anymore. There are phamphlets available on meige syndrome. Ask your doctor. I think it's great to have all of you to talk to and sound off when I need to. I live with my husband, who is a love, but he doesn't like to hear me complain. I think he goes into denial or something. Yes, it's too bad we couldn't get together and have a party or something, but guess this is the next best thing. Hear are some Christmas cookies for you that I made -- 00000000000. Actually, you know, I thought I was the only person on the planet who had this when I was first diagnosed. Carol in Naselle, WA who wishes she had some of your Florida heat instead of this cold, damp, rain and dreary weather. --modified by carol brown at Sun, Dec 09, 2001, 15:05:23
Re: face draws up
Hi Mary, I posted a link below that you can just click on and it will take you to a site that will talk about BEB and Meige. It doesn't talk about Apraxia but if you look at the top of this bulletin board page and click on where it says BEBRF Main Pages-there is information there about Apraxia and other things of interest. Check it out. If you have trouble getting to it or finding it, let me know.
http://www.dystonia-foundation.org/defined/bleph.asp Shirley in Arkansas who can relate to your apraxia problem.
Re: face draws up/shirley
which is the more progressive of the two, the BEB or the Meige? does anyone know about this?
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