Blepharospasm Bulletin Board

help
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Posted by: gwinnieus
02/09/2004, 22:23:48


im a new commer....just been diagnoised with this.....would any one tell me just what
it is,,,theatment will i ever recover?

jerry in ohio




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Re: help
Re: help -- gwinnieus Top of thread Archive
Posted by: Shirley Barr in New Mexico
02/09/2004, 22:35:14


Hi Jerry and welcome to the bulletin board. If you click on the below link it will take you to a site where the symptoms and treatment options are discussed.

Maybe you could tell us a bit about your symptoms and what your doctor told you.
Hopefully the below link will be able to answer some of your questions.
You could also contact the Benign Essential Blepharospasm Research Foundation and they will send you a packette of information. Their contact information will be in the "Welcome To Newcomers" that is at the top of the bulletin board page.

Shirley in New Mexico


Related link: http://www.blepharospasm.org/
Modified by Shirley Barr in New Mexico at Mon, Feb 09, 2004, 22:38:48

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Re: help
Re: help -- gwinnieus Top of thread Archive
Posted by: June in Toronto
02/10/2004, 06:00:03


Hi Jerry and welcome to the blepharospasm bulletin board - sorry to hear though that you have been diagnosed with this disease. Check out the link that Shirley posted for you - it gives good information on beb. Botox injections are the treatment of choice usually - the exact injection sites and amount of units of botox takes time and patience for you and the doctor to get it right for you. Keep a journal of your treatment and the results so that you and your doctor (hope its a good movement disorder specialist) can confer and change if necessary. Let us know know more about your symptoms, etc, and, yes, some people do go into remission although they are few and far between. Good luck to you and keep in touch.

June in Toronto (Canada)




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Re: help
Re: Re: help -- June in Toronto Top of thread Archive
Posted by: Ann Doyle
02/10/2004, 11:04:23


I'll give you the bad news first. So far there is no cure for Blepharospasm but not everyone needs Botox injections. Some get by with medication , klonopin, neurontin or a multitude of others. Different drugs work for different people. Benedryl worked for me the first two years. Also sun glasses or ski glasses that have tops and sides. Some like sun glasses that are called FL-41. Singing stops the spasms for some. Each person is different and has a different reaction. Some stay the same for years. Others get worse. If things get too bad, there is an operation called a myectomy that cuts the eye muscles so they don't spasm. Very few people get that bad. Most of the time drugs work for a long time . Botox really isn't very painful for most people. I don't feel any thing except an on occassion it will feel like a bee sting. People who do need Botox get it every 3 months usually. That's the norm. Some need it more often and some less often. As I said none of us are exactly alike. I am telling you the worst.
A friend of mine has had it for 12 years. She gets Botox every three months. She is just fine in between time, no spasms, except she is uncomfortable for the week before and she does always wear sun glasses outside.
I go to a Movement Disorder Neurologist. My friend goes to an eye DR.
Please let us know more about your condition and do write for the free literature from the site Shirley suggested. Ann Doyle



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