update on person in remission in Franklin,TN


Posted by Delaine Inman , Dec 05,2001,21:23   Archive
The person in Franklin who notified me to take her off the list for mailings re:support group because she is in remission called me tonight. She developed symptoms in July of 1987 and was told she had dry eyes and she kept going back and became a pain in the Butt and the doc finally referred her at the end of the year to Emory in Atlanta. The doc there showed her the referral letter that said she wasn't a very interesting case, but a real annoying one. The doc at Emory told her immediately she was a very interesting classic case of BEB and put her in the new Botulism toxin research project and she took injections at no charge for about a year. She said she extended the intervals of taking injections each time and by the end of the year she didn't need it anymore. She also was talking to a herbalist in Denver who after talking with her on the phone sent her a series of herbs during that year and she finally flew out to Denver and met her and she did something with a machine that sent tiny shocks through her body and she has been in remission ever since. She said the symptoms decreased very gradually over the year, but haven't returned. She said sometimes if she gets over tired or stressed her eyes will feel tired and uncomfortable. Her symptoms were worse in right eye and the light sensitivity was very bad. Her eyes were closing so badly she had to prop the eyes open to do things. She said her spasms were never so hard she couldn't prop them open with fingers. She gave me the herbalist number, but I haven't tried it yet to see if the number is still working. She sees a chiropractor twice a month and gets massage. Her husband works at Saturn too. I also have more questions for her...does she work? would she come to group to share her story sometime, post her story on the BB and a few other things. My granddaughter was here and I was a little distracted and hated to stay on the phone too long. I'll keep you posted.



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Re: update on person in remission in Franklin,TN

Re : update on person in remission in Franklin,TN --- Delaine Inman
Posted by June in Toronto (June Floyd,June in Toronto), Dec 05,2001,22:49 Top of Thread Archive
Thanks, Delaine, for the update - very interesting. I look forward to hearing more when you find out.

June in Toronto (beb/meige)




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Re: update on person in remission in Franklin,TN

Re : update on person in remission in Franklin,TN --- Delaine Inman
Posted by kathy , Dec 06,2001,05:02 Top of Thread Archive
yes , delaine, thank you. are you sure it's true?



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Re: update on person in remission in Franklin,TN

Re : Re: update on person in remission in Franklin,TN --- kathy
Posted by Delaine Inman , Dec 06,2001,14:50 Top of Thread Archive
I have no reason to doubt the story. She has been on the BEBRF mailing list getting the newsletter for years. She said she 6 months felt like forever to get a diagnosis and was having to work in sunglasses and prop her eyes open to drive, work and watch TV. Sounds like BEB and Emory thought so too. The Botox was very effective for her and she got it the first time, then 3 months, then waited 4 months and kept being able to extend the time until she stopped after a year with Botox and herbs over a period of a year. She said the herbs were expensive. I asked were they less than a $100 a month and she said, "Oh yes." The herbs varied during the year to "get her body back into balance" and then she flew out to see her for a visit and got the electrical stimulation which has kept her in remission.



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Re: update on person in remission in Franklin,TN

Re : Re: update on person in remission in Franklin,TN --- Delaine Inman
Posted by kathy , Dec 07,2001,08:56 Top of Thread Archive
thanks, delaine. we need to know the herbs she is taking and if she thinks they are partially responsible for her remission. did she take them in tea form? i had someone recommend a list of herbs to me a couple of years ago but i felt they were too expensive, but if they worked!!?



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Re: update on person in remission in Franklin,TN/delaine

Re : Re: update on person in remission in Franklin,TN --- Delaine Inman
Posted by kathy , Dec 07,2001,09:24 Top of Thread Archive
do we know how long she has been in remission?

--modified by kathy at Sat, Dec 08, 2001, 05:16:10




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Re: update on person in remission in Franklin,TN

Re : update on person in remission in Franklin,TN --- Delaine Inman
Posted by Shirley-Arkansas-USA , Dec 06,2001,18:50 Top of Thread Archive
Thanks for the information Delaine. It is always nice to hear of someone that has gone into remission or is doing better.
I think that there are many different causes for Blepharospasm with some of them being known as "reflex blepharospasm" I would think that at times someone might have all the symptoms of BEB but it might be more of a reflex type and when the cause is corrected, the symptoms would go away. With true BEB, I feel that it is a brain abnormality that might not be so easily corrected thus the occasional report of some people getting better or going into remission where countless others do not. I haven't made myself very clear on any of this but it's the best that I can do at the moment.
Let us know if you find out anything else.

Shirley in Arkansas.




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Re: update on person in remission in Franklin,TN

Re : Re: update on person in remission in Franklin,TN --- Shirley-Arkansas-USA
Posted by kathy , Dec 08,2001,04:54 Top of Thread Archive
okay, what we are saying here is that there are 2 different kinds of BEB. reflex and true BEB. right? is one caused and one genetic??



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Re: Reflex Blepharospasm

Re : Re: update on person in remission in Franklin,TN --- kathy
Posted by Shirley-Arkansas-USA , Dec 09,2001,19:40 Top of Thread Archive
I was just saying that people can have symptoms of squinting, light sensitivity, eye irritation, rapid blinking and squeezing from eye problems such as dry eye, foreign bodies, eye injury, medications, eye infections and allergies to name a few. The symptoms would be in response to an eye problem. Therefore they would be reflex symptoms or with the right combination of things, they would cause a reflex blepharospasm. When the problem was corrected, the symptoms would go away. Someone could possibly have symptoms of Blepharospasm and it just be a reflex response to some correctable problem. This has been mentioned briefly at the conferences.

This is not the case for most of us. The symptoms that we have are caused by a problem in the brain and therefore even if you correct a dry eye problem or get it under control, we still have Blepharospasm. If an allergy or eye infection gets better, we still have Blepharospasm.

In my opinion, occasionally people have symptoms of Blepharospasm and may even be treated with botox and they are just having reflex symptoms from an eye problem. When the eye problem resolves for whatever reason the reflex blepharospasm will go away. This might be a portion of the people that we say go into spontaneous remission or got better.
It's just my opinion of a possibility of what is happening in some cases.




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Re: Reflex Blepharospasm

Re : Re: Reflex Blepharospasm --- Shirley-Arkansas-USA
Posted by kathy , Dec 10,2001,08:00 Top of Thread Archive
thank you for the explanation. But i would still like to know about the other things that contributed to her having it go away, delaine?



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