Newcomer good news goes bad


Posted by joanna , Sep 11,2001,19:25   Archive
I reported Sat.that my botox seemed to have worked miracles. Sat. and Sun. my face was calm and I was driving all over the place. Today, I am right back where I started. A neurologist who specializes in movement disoders has agreed to see me even though he is not accepting new patients. I am afraid that this means botox will not work for me, and now I am so discouraged. I don't even know if it is appropriate for me to be on this board since I seem to have Meige syndrome now.

Anybody with Meige out there who has found help??




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Re: Newcomer good news goes bad

Re : Newcomer good news goes bad --- joanna
Posted by Shirley-Arkansas-USA , Sep 11,2001,19:57 Top of Thread Archive
Joanna, I'm glad that you posted again. What with so much going on around the East coast, I can't exactly remember how long ago it was that you had your botox. I'm thinking that you said that you were having excellent results within a day of getting the botox. I might be thinking of someone else, though.
For most of us, botox takes anywhere from a few days to up to two weeks to see the full results of what it is going to do. Usually this is a gradual thing. We all have good days and bad days and we don't usually know what causes either. They come out of the blue and leave just as quickly and without warning. You may just have been having a few really good days. This doesn't mean that your botox is not going to work. I know that it can be discouraging but in fact this disorder can come on very suddenly but it's treatment can be very slow in coming about to an acceptable level. Treatment takes times and it is through trial and error. You would have been, I feel, very unusual indeed if you had gotten perfect results from one set of botox injections within a day or two after you got them. I'm afraid that is usually not the case, although I'm sure that it must occasionally happen.

Please don't give up on this and don't feel that you don't belong here. You very much do belong here. Don't give up. Just know that it takes time. We are here to support you on good days and bad.
Many of us on this board have Meige. It frequently goes right along with blepharospasm. I also had really very good days Saturday and Sunday and then Monday was bad. Today is a little better. I just try to go with the flow anymore and do what I can do when I can and try to rest and do quiet, relaxing things on those bad days.

Hang in there and keep talking to us. You do belong here. I am sorry that things didn't work out with the botox as you had thought. I know that it is a big letdown.

Shirley in AR.




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Re: Newcomer good news goes bad

Re : Newcomer good news goes bad --- joanna
Posted by Ann Doyle , Sep 12,2001,06:34 Top of Thread Archive
Joanna, I have Meige too. The first time the doctor gave me shots, he said he just wanted to do the eyes first and get them right. He did. The second time he asked me a bunch of questions concerning Meige like Did I bite my tongue.
I was expecting to get shots around my mouth but instead I got one next to my cheek half way down my nose; one in the middle of the cheek and one near my ear ( been clenching the jaw a lot).
The one near my nose partially paralyzed my upper lip for awhile--an inconveniece ( hard to put on lipstick and eat sandwiches or bite anything). So I realized there is a price to pay. Some will be worth it and some not. I imagine it is up to me to decide. I'll see him again Sept. 20th . Can hardly wait.
You belong. Ann D.



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Re: Newcomer good news goes bad

Re : Newcomer good news goes bad --- joanna
Posted by Kelly Saffell , Sep 12,2001,08:09 Top of Thread Archive
I was diagnosed with beb 6 years ago when I was 26 and the meige followed shortly there after. I receive botox for both. I receive injections in the lids, the brow, temple, on both sides of the nose (higher where the bone is because it can migrate down a little), upper cheek, and deep into the jaw muscles. I clench my jaw alot and although the botox isn't a cure all, without it my neck muscles get so tight I feel like I am choking. It has taken alot of time to find the treatment that works for me and I tried 3 doctors before I found the best one for my symptoms. For me botox is not a cure but has made me able to care for my young daughters so in that regard I consider it a success. Please continue to post on the board. There is not only alot of info you can gain but a wealth of love and support.

Kelly in Dallas




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Re: Newcomer good news goes bad

Re : Newcomer good news goes bad --- joanna
Posted by Joanne Matuzas , Sep 12,2001,11:44 Top of Thread Archive
Joanna, you belong right here with us. Shirley, Ann and Kelly have given you good responses regarding this. There is a certain amount of unpredictability both with the botox injections and the disorder itself.
The botox may take from 1 to 3 weeks to kick in. Your body was normal
for a short time but no one knows for sure if it was from the botox itself or the fact that a foreign substance entered your system and that's how it responded for the moment. Take heart, this is a wonderful support group and we'll do what we can to help. Glad you found us. Joanne M. San Diego, CA



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