Re: Early Symptoms/THANK YOU
Hi Katrina, I am also new to recognizing my symptoms as being BEB/Meige. And, I live in the Central Coast area. Where are you at? I have been researching about the doctors available around here. I have received names from the BEBRF and the Dystonia web site. In addtion, another BEB BB friend provided the name and recommended Dr. Josh Novik in Santa Cruz.
I was amazed that there were so many doctors listed on the dystonia board that say they specialize in BEB/Meige treatments - opthomologists and nuerologists. Seemed like there may be more doctors than patients! Either that orBEB is more common than it seems. If you want to email me, I will forward the list from BEBRF. Have a good day.
Re: Early Symptoms/THANK YOU
I used to live in Monterey and went to Dr. Novic when I was looking for a diagnosis. I was NOT impressed with him and would not recommend him as a specialist. I would recommend Dr. Susan Carter at UCSF for botox. I believe she is a neuro-opthalmologist. Her personality is, well, let's just say we called her the "Ice Queen", however, she is good at what she does. Happy hunting.Dee in OR
Re: Early Symptoms/THANK YOU
Very thought provoking post. As I've said previously , the Fl41 rose tinted glasses that filter out a lot of the light that can trigger these spasms seem to help alot, altho i've had occasions where the light is too bright even thru them. If you feel you are going to have a "bad eye day" it is best to avoid as much stress as possible and stay out of situations that you know will make things worse.
I really don't know how i am handling the computer, i have noone patient enough to teach me. It is an invaluable resource tho. i have a touchpad "cat navigator" that enlarges the print for me, or i probably wouldn't use it as much as small print is also one of the things that can trigger spasms for me.
--modified by kathy at Thu, Feb 14, 2002, 07:11:51
Re: Early Symptoms/THANK YOU
I'm not sure there is anything that can slow progression but not everyone has progression. I've talked with several people who get botox every 6 months and function quite well. There are cetain meds that can help ease spasms and everyone has their own "triggers" that they know to avoid if at all possible. Some are able to read, others can't (I listen to books on tape). Some can watch TV, others can't. Some thrive on exercise, for me it is a horrible trigger so I do yoga instead. Stress is ALWAYS a trigger but sometimes it can't be helped or avoided. I have to limit my computer time to about 10 minutes at a time or my spasms intensify. Everyone is different but there is almost always someone out there with "your problem" and can help you through it. I see a neurologist for my meige (botox in the jaw and meds) but I have found the the botox for my beb works much better when given by an opthalmologic surgeon. Keep asking questions - if anyone has the answers, it's one of us!
Kelly in Dallas
Re: Early Symptoms/THANK YOU
Hi Katrina,I've read your posts, and I'm new to the group like yourself. Your symptoms seem identical to mine; twitching, bruised feeling, and some twitching in areas other than the eyes. Neurologists seem to know very little. Very interested to compare notes with you. I live in the San Jose area and have researched doctors who know about these things. There is a doctor in Southern California, John Alksne with UCSD who seems quite knowledgable on these topics. 619-543-5540. Please respond and let's compare notes!
Re: Early Symptoms/THANK YOU
Hi Jordan,
Well, can you believe this?? I agree,extremely interesting about our symptoms. I think Linda T is going to email a list of Dr. I won't be able to see anyone in So. Ca. Have you narrowed any down in this area?
I am also realizing that tiny pin prick pain in eyes is more constant right now.
I am beginning to be aware of triggers -light,computer,etc. and minimize or shorten them. It's not easy so far but I think it will help.
Have you done much research on any other eye disorders with these symptoms?
I would like to stay in touch. Here ---and you can email me if you want.
Thank you for responding---
Katrina
Re: Early Symptoms/THANK YOU
If you live near San Francisco, Dr. Scott and Dr. Jonathan Horton at UCSF are both excellent BEB Dr's. Scott started he use of Botox for BEB and other forms of Dystonia; I have personal experience with Horton and recommend him highly. Dr. Peter Quiros at USC's Doheny Medical Inst. is outstanding - I use him when he makes his twice-monthly jaunts to Orange County.
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