What to tell eye doctor/BEB?


Posted by Katrina , Mar 26,2002,05:40   Archive
Reviewing: I developed and was diagnosed 8 or so yrs ago with Cervical Dystonia and Essential Tremor. Over the yrs both,esp Dystonia have moved into body and face, (fit oromandibular description). I am 99% sure my grandfther had BEB (and Tremor).
A couple of months ago I went to opthmalogist for 2 new acute eye symptoms:Painful spontaneous copious tearing and bruise like pain...got basic screening,he suspected sinusitis...sent me back to PCP who did sinus x-ray.pronounced no sinusitis.
On further contemplation and after visiting this board, I realize other symptoms which I ignored (eyelid spasm) or attributed to my other neuro/immune disorder...CFIDS (ptosis,phototobia and photosensitivity, burning, eye strain on-line,reading,TV) are escalating and that this whole list together needs to be presented to him.
I am going Wednesday...my plan is to present the more complete list...present family history? my goal is to get his feedback re: whether he's familiar with BEB and does this fit the early symptom profile? Does he have knowledge of ortho=neurologist or BEB specialist in area? BEB/Botox specialist? Can I be covered for tinted glasses? (on Medi-Cal) What else?
He may not be able to answer any of this. I want to be firmly pro-active,yet know there is a fine line between that and threatening Dr's ego and my credibility by "self-diagnosis".
I would like to know if anyone has feedback on how to present this or what else to add/ask... (I think I will have good back-up from PCP if I have to return)
I did receive a Physician list via email from this a BEB board member, but I cannot read it till my printer is repaired...cause of colored ink... Also,most seem to be out of town...difficult...
I am in Santa Cruz,Ca.
Any feedback appreciated...
Katrina

--modified by Katrina at Tue, Mar 26, 2002, 05:44:17




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Dr. info ...

Re : What to tell eye doctor/BEB? --- Katrina
Posted by Moderator-JB , Mar 26,2002,07:53 Top of Thread Archive
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




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Re: Dr. info ...

Re : Dr. info ... --- Moderator-JB
Posted by Ken C. , Mar 26,2002,11:56 Top of Thread Archive
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




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Re: Dr. info ...

Re : Re: Dr. info ... --- Ken C.
Posted by Moderator-JB , Mar 26,2002,12:09 Top of Thread Archive
Yes, that's the place. Just click on it and sift through the various headings to see what you think will help you.

Judy




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Re: What to tell eye doctor/BEB?

Re : What to tell eye doctor/BEB? --- Katrina
Posted by Lynn Yarbrough , Mar 26,2002,13:24 Top of Thread Archive
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




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Re: What to tell eye doctor/BEB?

Re : Re: What to tell eye doctor/BEB? --- Lynn Yarbrough
Posted by Katrina , Mar 27,2002,06:22 Top of Thread Archive
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



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Re: What to tell eye doctor/BEB?

Re : What to tell eye doctor/BEB? --- Katrina
Posted by Shirley-Arkansas-USA , Mar 26,2002,20:10 Top of Thread Archive
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




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Re: What to tell eye doctor/BEB?

Re : What to tell eye doctor/BEB? --- Katrina
Posted by Bob Campbell , Mar 26,2002,20:58 Top of Thread Archive
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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