Re: update on person in remission in Franklin,TN
Thanks, Delaine, for the update - very interesting. I look forward to hearing more when you find out.June in Toronto (beb/meige)
Re: update on person in remission in Franklin,TN
yes , delaine, thank you. are you sure it's true?
Re: update on person in remission in Franklin,TN
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.
Re: update on person in remission in Franklin,TN
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!!?
Re: update on person in remission in Franklin,TN/delaine
do we know how long she has been in remission?
--modified by kathy at Sat, Dec 08, 2001, 05:16:10
Re: update on person in remission in Franklin,TN
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.
Re: update on person in remission in Franklin,TN
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??
Re: Reflex Blepharospasm
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.
Re: Reflex Blepharospasm
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?
|