Blepharospasm Bulletin Board

newbie here from malaysia
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Posted by: jeff
04/05/2004, 23:01:06


hello everyone im new here
got to know this site today..
i cant stop blinking my eyes.
had this since im young.. usually im ok at the morning
when i just woke up.. get worst later the day..
very Sensitive to bright lights.
i just need to blink to feels better. if i try to control it
it turn worst.
not sure where i can get treatment here in malaysia.
any advice from you all?



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Re: newbie here from malaysia
Re: newbie here from malaysia -- jeff Top of thread Archive
Posted by: June in Toronto
04/06/2004, 11:07:49


Hi Jeff, welcome to the beb bb but sorry to hear you might have this disease. Go to the BEBRF main page at the link below and get yourself more information and have them send you out some printed material on the subject. You need to see a good movememnt disorder specialist, or at least a doctor who is familiar with Blepharospasm/Dystonias. But, as you said, that might be incredibly difficult for you in Malaysia. I, too, blinked up a storm since childhood but only got it diagnosed (it stopped and started during my lifetime) when I was 55. I've had it for 9 years now and get botox every 3-5 months (90 units total each time) - it works well for me but with about a month of side effects. Some people hardly ever get side effects as we are all so different, so don't worry about this. Perhaps you should be using some eye drops (non-preservative kind) to help and be kind to your eyes. Do you work? Tell us more about yourself if you feel comfortable doing so and ask any questions and we will try and answer them. Best wishes

June in Toronto - Malasyia is such a long way away!


Related link: http://blepharospasm.org

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Re: newbie here from malaysia
Re: newbie here from malaysia -- jeff Top of thread Archive
Posted by: Cynthia
04/06/2004, 15:11:22


Welcome, Jeff! I can't improve on the good advice June has given you already, but do want to offer moral support. Because of your question I'm sure a search is underway for a place of treatment for you. Have you seen any doctor at all for your problem or did you find this board by searching the internet? I believe there have been several who found it that way with very good results.
Yes, you are a long way off in miles ... but just a few clicks away here. Amazing!
Cynthia in IL USA



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Re: newbie here from malaysia
Re: Re: newbie here from malaysia -- Cynthia Top of thread Archive
Posted by: jeff
04/07/2004, 04:12:49


hi thanks for your advice june & cynthia.

well im 29 this year.. i work as a system administrator.
got to know this site form the search engine.
having this problem for almost 20yrs, cant remember exactly when.
since i was young there were alot of people keep asking me
why do i blink so often. sometimes its just too irrating when they just look and laughed at me. even my relatives do that.
they will just sit infront of me and look at me like im a clown.
they said this is just a bad habit and i can control it.. they just teasing me so that i know when im doing it.
well yes i can just stay unblink for a while but then it just keep comming back.
or sometimes when im at a restaurant eating. the on-lookers just cant stop looking at me.. as if im an alien.

i try search at the malaysian website, the botox they use her mostly for cosmetic are they the same as the one you are using?
here is the website http://www.dermagenesis.com.my/botox.htm
im sure if they sell it under "cosmetic" product it will be more expesive.
got a few questions here
1) how much is a bottle of botox anyway?
2) anyone got a picture of botox?




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Re: newbie here from malaysia
Re: Re: newbie here from malaysia -- jeff Top of thread Archive
Posted by: June in Toronto
04/07/2004, 06:09:59


Hi Jeff,

As we all live in different countries I can't say how much you'd pay for botox (mine is mostly covered by an insurance plan - I know others in the U.S. pay a lot but even then its different prices) so it really varies. Yes, the botox used for cosmetic use is the same botox used for medical use. Botox was first used by a Dr. Scott in the U.S. for cross-eyes - he realised how it affected the muscles and used it for Blepharospasm and other Dystonias and now its used for stroke victims, migraines, and many other medical uses. Botox comes in vials of 100 units each - as I get 90 units that means there's 10 units left over and it can't be saved (perhaps the doctor's wife uses it for wrinkles:-). Some people share a vial if they use less and are injected by the same doctor, at more-or-less the same time. A doctor injecting you for the first time most probably will use less units of botox to see how you react. He/she should show you on a diagram where he injects so that the amount of units and the injection sites can be adjusted the next time around to provide you with better treatment - you should keep a daily log of your reactions to show the doctor onthe next visit to help with readjustments.

I'm sorry people are so mean to you about your blinking. I remember very well my Grandfather telling me to stop blinking -hee ven had me hold a mirror in front of me to see for myself, but of course we didn't know then that its impossible to see ourselves blink.

have you checked out the BEBRF main pages yet? It will tell you a lot more than the cosmetic web site you noted. Talk to you later.

June in Toronto (beb/meige over 9 years)




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Re: newbie here from malaysia/teasing
Re: Re: newbie here from malaysia -- jeff Top of thread Archive
Posted by: Kathy in Atlanta
04/14/2004, 06:50:21


Jeff, something you could say to your 'friends' when they tease you is to ask them if they have ever had a charlie horse or muscle spasm, did it hurt!! and could THEY control it. pretty simple.



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Re: newbie here from malaysia
Re: newbie here from malaysia -- jeff Top of thread Archive
Posted by: Kathleen
04/07/2004, 08:36:22


As June said, the price of botox varies greatly. The total cost for the botox, injections and the doctors visit for me is about $1200 each time. Luckily, I have insurance that pays the bulk of the cost. I have found that the information on the BEBRF website is very helpful in explaining this disorder to people. I wouldn't be afraid to tell your family and others that it is a neurological condition that you can not control and ask them to read the info from the BEBRF. Hopefully, that will help them respond more positively. The pamphlets and articles have been very helpful for my kids and my husband to gain some understanding of what is happening with me. If I notice people I don't know staring at me, I simply wave at them - it usually diverts their attention real quickly.



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Re: newbie here from malaysia
Re: Re: newbie here from malaysia -- Kathleen Top of thread Archive
Posted by: Cynthia
04/07/2004, 10:41:32


I'm shocked that the cost of your botox is $1200! That seems outrageous ... my charges are less than half of that (well-known eye clinic in Chicago suburbs). Perhaps they can buy "in bulk" ...
Kathleen are you in ND?
I agree with the advice about the brochures. I've given them to several interested people, especially doctors, dentists, etc.
Cynthia in IL



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Re: newbie here from malaysia
Re: Re: newbie here from malaysia -- Cynthia Top of thread Archive
Posted by: Kathleen
04/07/2004, 11:40:51


Yes, I'm in ND, so I suspect that much of the cost is related to low volume. Also, he uses EMG directed injections, so there is additional cost there. I really gulped the first time I got a bill - now I've become used to it - I meet my deductible and co-pay really quickly.



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Re: newbie here from malaysia/Jeff
Re: newbie here from malaysia -- jeff Top of thread Archive
Posted by: Kathy in Atlanta
04/07/2004, 10:42:54


To feel less self-conscious, you might consider a pair of medium tinted glasses to hide the blinking. This might also settle your eyes down sometimes. A lot of of us wear tinted glasses because of the light sensitivity.



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