The "unofficial" official BEB Book
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Posted by: Delaine Inman ®

12/12/2002, 15:43:53
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Hi Delaine:

We finally received our copy of "The Official Patient's Sourcebook on Benign

Essential Blepharospasm." Total cost was $27.15 from Barnes and Noble. It

is a soft cover book with about 100 pages. Some of it is general

information; the majority of it is how to find Internet sites that may have

information on various subjects relating to BEB. Our Foundation was

mentioned twice, one with the right street address and once with a street

address that was 5 years old (P.O. Box was right both times). They seem to

have drawn the information mainly from sites on the Internet. They have some

information on locating clinical trials (we have printed the site they

mention in the Newsletter before) but the only actual one they mention is

the mexiletine trial at NIH that some of our patients have participated in.

They site some research projects - Dr. Morecraft's and Dr. Evinger's. On

published books, they give our reference volume but they obviously don't

know that Dr. Bosniak and Pergaman Press gave us the publishing rights

several years ago. All in all, its a book that tells you how to find

information rather than giving you a lot of it. The price is rather steep

for what it is but you can make your own judgment about whether you wish to

buy it or not. For patients who have access to the Internet, this might

have some helpful information on accessing various web sites that may

contain information on BEB.

Mary Smith

Office Manager

BEBRF, Inc.

P.O. Box 12468

Beaumont, TX 77726-2468

409-832-0788

fax: 409-832-0890

email: bebrf@ih2000.net







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Re: The "unofficial" official BEB Book/mexilitene??
Re: The "unofficial" official BEB Book -- Delaine Inman Top of Thread Archive
Posted by: Kathy in Oregon ®

12/13/2002, 09:16:14
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Thanks for posting this! I've never heard of mexilitene. Can someone enlighten me please.






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mexiletine
Re: Re: The "unofficial" official BEB Book/mexilitene?? -- Kathy in Oregon Top of Thread Archive
Posted by: Virginia ®

12/13/2002, 17:22:23
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Here's a link to the site explaining the trial.

Related link: http://www.clinicaltrials.gov/ct/gui/show/NCT00001784?order=1

--modified by Virginia at Fri, Dec 13, 2002, 17:25:14





Related link: http://www.clinicaltrials.gov/ct/gui/show/NCT00001784?order=1
Modified by at Fri, Dec 13, 2002, 17:25:14

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Re: mexiletine/Virginia
Re: mexiletine -- Virginia Top of Thread Archive
Posted by: Kathy in Oregon ®

12/14/2002, 09:14:04
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Oh . So this is going on now and appears to help those mainly with dystonia.






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Re: mexiletine/Virginia
Re: Re: mexiletine/Virginia -- Kathy in Oregon Top of Thread Archive
Posted by: Virginia ®

12/14/2002, 18:09:38
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Yes, and BEB is a focal dystonia - one of the kinds of dystonia that this trial is targeted for.






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Re: mexiletine/Virginia
Re: Re: mexiletine/Virginia -- Virginia Top of Thread Archive
Posted by: Kathy in Oregon ®

12/15/2002, 09:12:36
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i don't remember this being in the newsletter. Was it? and what about those tetanus experiments? Does anyone know how those turned out?






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Re: mexiletine
Re: Re: mexiletine/Virginia -- Kathy in Oregon Top of Thread Archive
Posted by: Shirley-Arkansas-USA ®

12/15/2002, 10:25:52
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Mexiletine has been discussed in past newsletters. I haven't heard anymore about the tetanus experiments. I don't remember them being mentioned at the past conference.

Shirley in Arkansas

--modified by Shirley-Arkansas-USA at Sun, Dec 15, 2002, 10:26:17






Modified by at Sun, Dec 15, 2002, 10:26:17

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Re: mexiletine
Re: Re: mexiletine -- Shirley-Arkansas-USA Top of Thread Archive
Posted by: Ann Doyle ®

12/15/2002, 13:12:36
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This sounds like good news to me. I didn't have any idea someone was working to help us. This just seems so positive.






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Re: mexiletine
Re: Re: mexiletine -- Shirley-Arkansas-USA Top of Thread Archive
Posted by: Kathy in Oregon ®

12/16/2002, 08:51:48
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Well is anyone on our support group taking it and it is helping or hurting them? Or does anyone know of someone taking it?






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