Posted by Jodi , Jun 10,2001,19:59   Archive
I'm so glad I found you!

I've been walking around with this condition ever since I was 18 (I'm 38 now). I had always been told that this condition was due to stress or nerves. It's so embarassing! I never ever suspected that this was an actual condition or that it was treatable! But now that I knowt this, I thought a good starting place would be to see an optomologist (spelling?). Of course my vision tested normal (I never thought it was my vision). My question to all of you is, what's my next step? I've been all over the internet studying this - but who treats it? A neurologist? Eye doctor? Please, please reply. I'm SO over this!


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Re: Finally!!!

Re : Finally!!! --- Jodi
Posted by Sally - in - Idaho , Jun 10,2001,20:22 Top of Thread Archive
Hi Jodi,

Welcome to this bulletin board. We will try to answer as many of your questions as we can.

First of all ... have you actually been diagnosed as having blepharospasm? You ask what kind of doctor treats it, so I am wondering if a doctor diagnosed it or if you matched your symptoms to something on the Internet.

Your first step should be to contact the BEBRF (their address is at the top with the welcome) and get as much free information from them as you can. They are very helpful in answering your questions and in guiding you to doctors in your area who are knowledgable about BEB.

Most of the people who have posted go to neurologists, particularly movement disorder specialists, although many also go to ophthalmologists. I had not luck with the ophtho doctors, they just wanted to change my lenses and treat me for allergies, etc. My first visit to a neurologist gave me a diagnosis with just a few simple tests. I have been having Botox injections now every eight weeks for nearly two years. They help considerably. I do not take any meds for this condition.

Do you have spasms? Are you sensitive to light? I hope you will tell us more about yourself and how you are dealing with this disorder. I see by your profile that you live in the LA area. There are several on this BB who live in southern California. Perhaps they will help with medical info.

Anyway, hang around and someone else will no doubt give you better answers than I've been able to. Sunday is usually a slow day here; there will be more readers around tomorrow.

Sally in North Idaho

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Re: Finally!!!

Re : Finally!!! --- Jodi
Posted by Kelly Saffell , Jun 10,2001,21:17 Top of Thread Archive
I agree that you need to contact the bebrf immediately for info and they can also give you a list of treating doctors in your area. Although I see a neurologist every 3 months for botox in my jaw for meige and to regulate meds (she was my diagnosing physician) I have received MUCH greater success with botox in my eyes by an ophth surgeon. Everyone is different and every doctor is different so sometimes it pays to see several (I saw 3 before sticking with him for the past 5 years). Let us know more about yourself. I am 32, have had beb for 6 years, and I have 2 daughters (6 & 3).

Kelly in Dallas

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Re: welcome Jodi

Re : Finally!!! --- Jodi
Posted by Shirley-Arkansas-USA , Jun 10,2001,21:19 Top of Thread Archive
Hi Jodi and welcome to the Blepharospasm bulletin board. Sally has given you very good advice. You might also check at the top of this bulletin board page and click on where it says "BEBRF Main Page". There is a lot of useful, medical information there. Read over as much of it as you can and that will give you a better understanding of the disorder. Also, feel free to ask whatever questions that you would like. Your best bet for finding someone knowledgeable about treating Blepharospasm is by contacting the Research Foundation like Sally suggested. Neurologists who specialize in movement disorders are generally familiar with the condition.

What symptoms are you having?

Shirley in AR.

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Re: welcome Jodi

Re : Re: welcome Jodi --- Shirley-Arkansas-USA
Posted by jodi , Jun 11,2001,11:13 Top of Thread Archive
Thanks all of you for responding! No, I haven't been diagnosed as yet, but my biggest relief was just knowing that this is a condition, not just me being a FREAK!

I only have the blinking, but as I mentioned in my first posting, it's been going on for 20 years!

I will check the main page as you suggest and see if I can find someone in my area with expertise.

I'll keep checking back; I'm SO glad I found you guys!

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