Dr. info ...
Hello, Katrina ~Print out all of the descriptive Blepharospasm Main pages (the link is at the upper right corner of this page) and take them with you. Highlight each of the symptoms that you are experiencing. It should be enough to convince him. It sounds like you are headed in the right direction. Take care, Judy
--modified by Moderator-JB at Tue, Mar 26, 2002, 07:56:52
Re: Dr. info ...
I would like to see that as well, I dont see the link...unless you are referring to the main page. Ken
--modified by Ken C. at Tue, Mar 26, 2002, 12:07:38
Re: Dr. info ...
Yes, that's the place. Just click on it and sift through the various headings to see what you think will help you.Judy
Re: What to tell eye doctor/BEB?
Fortunately, I know a good neurologist in Santa Cruz: Dr. Josh Novik. I used him for several years when I lived in that area. He's knowlegable about BEB and well-trained, empathetic and helpful. He's skillful with Botox. I recommend him to you.--- Lynn
Re: What to tell eye doctor/BEB?
Hi Lynn,
Well, that is pretty amazing. I recall his name coming up here, but someone else had seen him and was "not impressed". When did you last see him? I am excited that you have such a great history with him. For one thing, my hx with neuros is so grotesque to me I simply do not go to anyone. This includes Stanford BTW...
Even better, if he is a Neurologist w/ BEB expertise, he could probably help me sort through all the rest of this Dystonic chaos crawling through my body and face.
I'll pray he will accept Medi-Cal...maybe he will be my new neuro...
Thanks Lynn!
Katrina
Re: What to tell eye doctor/BEB?
Katrina, all you can do is go in and talk to him. I think that you are off to a good start. Just tell him your symptoms and possibly ask if he has any patients with Blepharospasm. That in itself will let you know if he is very knowledgeable about the disorder without causing him to be defensive if you ask if he knows about it.
If you do think that you fit the mold for BEB, you will need to see someone that is very knowledgeable about BEB to get a proper diagnosis. That could be a neurologist that is a movement disorder specialist or neuro-ophthalmologist or an oculo-plastic surgeon or even some ophthalmologists. I prefer either of the first two. Surgeons like to do surgery and I'm not real sure how many ophthalmologists out there treat a lot of people with BEB. I'm sure there are some good ones, though.
I understand you needing to find someone close. Have you contacted the BEBRF for a list of doctors in your area? You might give them a call or email them for information. That address can be found in the "Welcome to Newcomers" at the top of the bb page.Let us know how it goes tomorrow. Shirley in Arkansas
Re: What to tell eye doctor/BEB?
Judy's approach is good. Don't come on gang busters at the start. Lay out the evidence for him. If he does not buy it, he should tell you why and then you have to decide whether it seems credible. I was told by half a dozen doctors that the problem was just dry eye. Although I had never heard of dystonia or blepharospasm at the time, I finally said, "This can't be just dry eye (i.e., an irritation-based phenomenon) because it starts and stops too abruptly. It has to be a neurological problem so I want to see a neurologist." If you sense a closed mind or don't get answers that satisfy you, hit the road.
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