Blepharospasm Bulletin Board

Blepharospasm Bulletin Board is On-line Again
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Posted by: Webmaster
11/15/2003, 21:59:18


I believe that the Blepharospasm Bulletin Board is fully functional again.

Note that you will have register again in order to be able to post.

The most recent 300 posts which were in the active bulletin board at the time it was taken down can be seen by clicking on the Recent Archive link beneath the top navigation bar. These posts can be read but linked followup posts can not be made to them. If you wish to make a followup post, return here to the active bulletin board and make a new post referencing the one in the archive.

During the next couple of weeks until we are sure there aren't any major residual bugs, if you post deathless prose, I suggest you keep a copy of it.

Bob Campbell
BEBRF Webmaster



Modified by Webmaster at Sat, Nov 15, 2003, 22:04:05

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Replies to this message


Re: Blepharospasm Bulletin Board is On-line Again
Re: Blepharospasm Bulletin Board is On-line Again -- Webmaster Top of thread Archive
Posted by: Lynn Yarbrough
11/16/2003, 11:10:45


Thanks, Bob. Nice job!

--- Lynn




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Re: Blepharospasm Bulletin Board is On-line Again
Re: Blepharospasm Bulletin Board is On-line Again -- Webmaster Top of thread Archive
Posted by: June in Toronto
11/16/2003, 13:28:33


Many, many thanks Bob for all your hard work - we certainly do appreciate you.

June in Toronto




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Re: Blepharospasm Bulletin Board is On-line Again
Re: Blepharospasm Bulletin Board is On-line Again -- Webmaster Top of thread Archive
Posted by: Joyce Wetuski
11/16/2003, 16:47:02


I have had blepharospasms for about ten years and have had a myectomy. Now dystonia has spread to my jaw and lower face muscles, cervical muscles and laryngeal muscles. I am seeing a neurologist (how by the way don,t belive half of what I say). He is giving me Lexapro and Clonazepam. If there is anyone out there that has any thing simular to what I have PLEASE answer my call for help.

My faith in God is the only thing that keeps me going.

Thanks, Joyce



Modified by Joyce Wetuski at Sun, Nov 16, 2003, 16:48:44

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Re: Joyce
Re: Re: Blepharospasm Bulletin Board is On-line Again -- Joyce Wetuski Top of thread Archive
Posted by: June in Toronto
11/17/2003, 07:22:27


Hi Joyce, Are you new to this bulletin board - if so welcome? I'm so sorry for your dystonia problems - it sounds like you have meige as well as beb. I think you should post your message again under a new title. It might get lost under this one! Keep the faith, as you say, its sometimes the only thing we have. God Bless

June in Toronto (beb/meige 8 years




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Cranial/cervical dystonia
Re: Re: Blepharospasm Bulletin Board is On-line Again -- Joyce Wetuski Top of thread Archive
Posted by: Virginia in AL
11/17/2003, 09:15:12


I've had BEB about 5 years, also have had a limited myectomy. I have cervical-cranial dystonia and fortunately my neuro does believe me. I also take clonazepam, but it doesn't completely alleviate the symptoms. As far as treatment goes, it's still a work in progress, so I can't offer you anything except empathy. We are trying meds without much success so far. I do get botox in my jaw muscles and neck.

Do keep going. There are good doctors out there who are willing to work with you. I wish I could tell you there was a magic cure, and maybe someday there will be. For now we'll just have to be guinea pigs and hope what we try will help the doctors figure out what works.

Virginia in Alabama



Modified by Virginia in AL at Mon, Nov 17, 2003, 09:16:21

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Re: Cranial/cervical dystonia
Re: Cranial/cervical dystonia -- Virginia in AL Top of thread Archive
Posted by: Joyce Wetuski
11/17/2003, 14:34:24


Virginia, Thank you so much for your response. I guess yesterday I was just in a sorry for me mode, you have made this day better to know there are other people as bad or worse than I am. Thank you very much.



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Re: Cranial/cervical dystonia
Re: Re: Cranial/cervical dystonia -- Joyce Wetuski Top of thread Archive
Posted by: PattiA
12/02/2003, 19:15:14


Dear Joyce, I am taking TBZ for dystonia. I began taking this three weeks ago. The doctor I am seeing is Dr. Joseph Jankovic who is the head of the Movement Disorder Clinic at Smith Tower at the medical center here in Houston. I can look up his number for you. He is hard to get in to see, but there are other doctors in his practice. God bless you, and I hope you can get relief. Patti in Houston



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Re: Blepharospasm Bulletin Board is On-line Again
Re: Blepharospasm Bulletin Board is On-line Again -- Webmaster Top of thread Archive
Posted by: Lyn Down Under
11/16/2003, 19:38:32


Great job, Bob - love the new look.

Lyn




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Re: Blepharospasm Bulletin Board is On-line Again
Re: Blepharospasm Bulletin Board is On-line Again -- Webmaster Top of thread Archive
Posted by: Kathy in Atlanta
11/20/2003, 07:22:33


Yes, thank you. I am having problems clicking on some of the things that usually work however and it says 'URL not found'. is this something that just needs to be readjusted . Also reloading is not doing the same thing it used to. AND what on earth is 'deathless prose??' Endless, wordy?



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Re: Blepharospasm Bulletin Board is On-line Again
Re: Re: Blepharospasm Bulletin Board is On-line Again -- Kathy in Atlanta Top of thread Archive
Posted by: Webmaster
11/20/2003, 19:33:54


"I am having problems clicking on some of the things that usually work however and it says 'URL not found'. is this something that just needs to be readjusted. Also reloading is not doing the same thing it used to."

Stop and think for a minute. How can I possibly address a question as non-specific as that?

As for "deathless prose", if you don't know what it means, look it up in Google.




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Re: Blepharospasm Bulletin Board is On-line Again
Re: Re: Blepharospasm Bulletin Board is On-line Again -- Webmaster Top of thread Archive
Posted by: Kathy in Atlanta
11/21/2003, 07:49:02


Thanks for your brusque reply.
How about clicking on the top of thread link does not bring up the usual subject and replies?? for one thing.


Modified by Kathy in Atlanta at Fri, Nov 21, 2003, 07:49:36

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Re: Blepharospasm Bulletin Board is On-line Again
Re: Blepharospasm Bulletin Board is On-line Again -- Webmaster Top of thread Archive
Posted by: Shelley
12/28/2003, 17:55:13


Just a test! I'm new and thought my registration might have gotten lost!
Shelley



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