Early Symptoms/THANK YOU


Posted by Katrina , Feb 14,2002,03:04   Archive
I've been absorbing your responses and other posts for these last few days.I am very appreciative of the details you all have provided---they are very helpful. It is important to me to have some of these clues before seeking another specialist. I have had a long harrowing decade medically with a few brutal experiences, particularly with neurologists, so I am in no hurry to repeat them. Yet I see that time may be of the essence. I was and am doing both this research and mental,emotional,spiritual preparation as I think of what my next steps will be. I am both battle weary and wise at this point.
I had no idea that other things I am experiencing would be part of Bspasm. I thought they were related to my other dx. ie: hearing about ptosis,sharp pain (different from the one I mentioned),pressure, light sensitivity, tearing. I already had photosensitivity, but lo and behold this past year I had my eyes instantly close in light too. Not glad to hear about that. The possible ptosis has escalated just the last couple of weeks.
I spend hours doing medical research on the several "orphan diseases" I am diagnosed with. The only treatments that have helped me in these 10 yrs.I found myself and presented to Dr. So much so, that he now requests that I research and document and present to him. I have found some astounding things relevant to my own care and even others in his practice.
Therefore the prospect of vision impairment is particularly frightening to me on top of anyone's terror as my health appears to hinge on this research. Not to mention the visual/cosmetic aspect since a few hours here and there socially and in my community are what keep any semblence of normality and relief from the nightmare of the last decade.
Some other questions:
Am I understanding that some treatments or avoidance of triggers can slow progression?
How are you all handling being on the computer?
Does anyone have a reccomended specialist near the Central Coast---California?
Does anyone see an opthamologist specializing in eye diseases rather than a M.O./Neuro ?
Does anyone have experience with Michael Aminoff at UCSF?
Thank you again so much for your welcomes and experiences...
Katrina

--modified by Katrina at Thu, Feb 14, 2002, 03:08:25




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Re: Early Symptoms/THANK YOU

Re : Early Symptoms/THANK YOU --- Katrina
Posted by Linda Tuttle , Feb 14,2002,06:59 Top of Thread Archive
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.



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Re: Early Symptoms/THANK YOU

Re : Re: Early Symptoms/THANK YOU --- Linda Tuttle
Posted by Dee in OR , Feb 14,2002,19:48 Top of Thread Archive
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




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Re: Early Symptoms/THANK YOU

Re : Early Symptoms/THANK YOU --- Katrina
Posted by kathy , Feb 14,2002,07:09 Top of Thread Archive
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




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Re: Early Symptoms/THANK YOU

Re : Early Symptoms/THANK YOU --- Katrina
Posted by Kelly Saffell , Feb 14,2002,13:53 Top of Thread Archive
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



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Re: Early Symptoms/THANK YOU

Re : Early Symptoms/THANK YOU --- Katrina
Posted by Jordan Zweigoron , Feb 14,2002,19:59 Top of Thread Archive
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!




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Re: Early Symptoms/THANK YOU

Re : Re: Early Symptoms/THANK YOU --- Jordan Zweigoron
Posted by Katrina , Feb 15,2002,06:17 Top of Thread Archive
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




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Re: Early Symptoms/THANK YOU

Re : Early Symptoms/THANK YOU --- Katrina
Posted by Lynn Yarbrough , Feb 15,2002,19:12 Top of Thread Archive
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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