Blepharospasm Bulletin Board

New to all of this
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Posted by: Sandi in Pa
03/20/2004, 07:31:23


Hi,I'm new to using a computer and putting my thoughts in writting but hear goes. 7 yrs ago it started like you all know watering eyes very sensitive to light What was wrong? After about 6 Drs they gave me a name BLEPHO 4 Drs more tring to give me shots that where hit and miss on working and tring to find a Dr that knew what he was doing. I found on the 17th Dr that took one look at me said from my history he would try Botox and start proceedures with my Insurance for me to see DR. A in Utah. First time on a plane and it was pure misery, uns know the crowds ,noise stressI was really spasing out couldn't see a thing(my mom and sister went-took me)A great help. to make a long -long story short I saw Dr A 2 times had both upper and lower myectomy done about two yrs ago. Ive been fine till recently but the nightmares are starting all over I had my first set of botox in the end of Jan. but they didn't seem to help much but know that I have a computer I can find all the helpful hints that you have like petroleum and suran wrap at nights. And any input I can give to possibly help someone else. So on that note I'm glad to have found all of you. And this may sound crazy but this delema as I call it has made me a stronger person and to relise not to take things for granted.



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Re: New to all of this
Re: New to all of this -- Sandi in Pa Top of thread Archive
Posted by: Cynthia
03/20/2004, 08:48:50


Welcome, Sandi, and thank you for your post. While we certainly are in sympathy with you on this disorder it was a great encouragement to read your positive assessment that you have become a stronger person. From reading the posts on this board it's very apparent that many of those posting have become stronger persons but perhaps don't realize it. It's great that you have learned to use the computer to get information and especially that you have found this wonderful support board. You put your thoughts into writing just fine!
Cynthia in IL hanging in there ...



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Re: New to all of this
Re: Re: New to all of this -- Cynthia Top of thread Archive
Posted by: Sandi in Pa
03/20/2004, 11:21:03


Thank-you Cynthia after reading more it just brings back soooo many memories about my life before its good to be able to come to grips with what we have It brings tears to my eyes when I read some of the comments because the memories are all flooding back and they aren't good ones. I have had about 2 good years of seeing but now am starting to have problems. I know I can find alot of help and support here. Thanks again my eyes are starting to blurr so its time out for me



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Re: New to all of this
Re: Re: New to all of this -- Sandi in Pa Top of thread Archive
Posted by: dottie
03/21/2004, 11:21:54


Hi Sandi, Dr. A also did my upper myectomy 15 months ago. The recovery has been a slow process. I have not had botox since the surgery, but am considering it. It seems after the surgery my eyes stayed open much better than they do now. My mornings are very good, about 2 in the afternoon they start closing, so I put genteal drops in them and rest and usually fall asleep then I can function again. I have blur vision when I get up but then it clears. Good Luck Dottie also from Pa.


Modified by dottie at Sun, Mar 21, 2004, 11:22:14

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Re: New to all of this/Sandi and Dottie
Re: Re: New to all of this -- dottie Top of thread Archive
Posted by: Nancy from PA
03/23/2004, 08:38:12


Hi girls...
I live in NE PA.... about half-way between Scranton, PA and Binghamton, NY...near the Elk MT. Ski Resort in Union Dale.
Just wondering where you live in PA....
I have had BEB since 1998 and am now the NE PA Area Rep for the BEBRF... I hold a support group meeting in Scranton every year.
Maybe you both live close enough to attend.
Nancy from NE PA where it is supposed to be Spring but is only 28 degrees this morning.



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Re: New to all of this/Sandi and Dottie
Re: Re: New to all of this/Sandi and Dottie -- Nancy from PA Top of thread Archive
Posted by: dottie
03/23/2004, 14:43:24


Hi girls, I live in Butler, Pa. about 35 miles north of Pittsburgh, I have been in Scranton for a little league baseball game. I would love to attend a support group meeting. When the meeting is going to take place I certainly would like to know. I have never attended a support group meeting. Sure has been cold. Thanks Dottie


Modified by dottie at Tue, Mar 23, 2004, 14:43:52

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Re: New to all of this
Re: New to all of this -- Sandi in Pa Top of thread Archive
Posted by: June in Toronto
03/21/2004, 06:48:46


Hi Sandi and welcome to the bulletin board - I'm glad, after all your trials and tribulations, you have found us as we really do understand and care. You have been through a lot (most of us had trouble getting this disease diagnosed) and I can't answer why, after 2 surgeries, you are experiencing yet more problems. Perhaps others who have had the upper and lower myectomies will respond to you. I've had beb/meige for 9 years and respond quite well to botox injections, so I'm one of the lucky ones. Let us know how you are doing and I'm sure you can help others who are at the beginning of learning about all this stuff. Take care

June in Toronto, Canada




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