Blepharospasm Bulletin Board

Movement Disorder Specialists
Posted by: Karen
03/28/2004, 13:09:16

I'm from Wisconsin. Does anyone know a good Movement Disorder Specialist in Wisconsin or nearby in another state?

I received my first Botox injections 5 weeks ago. The right eye has responded, but the left eye---not so well. I really believe it is the muscles from the lower part of the eye and into the cheek that is causing the scrunching in the left eye. It is not the eyelid scrunching up.

I saw my Opthalmologist the other day. She wants me to see a Neurologist and be tested for Myasthenia Gravis. In order to be tested for this, I have to wait until the effects of the Botox is totally worn off; otherwise the test will not be conclusive. Which means I cannot have more Botox until mid to late June. Ugh!

I am now a "one eyed susan". This darn left eye! Grrrr. I took a walk this morning despite the wind blowing, which was a mistake to do. Between the drying effects of the wind and the photosensitivity, it was not a pleasant walk. And I had dark sunglasses on and wore a visor to shield my eyes from the sunlight. It is overcast here, so it is not even a bright day.

I do not believe I have Myasthenia Gravis. The Opthalmologist doesn't either, but she wants to rule it out. What she doesn't want to listen to is me trying to describe to her which muscles I feel are doing this. I'm the one that's miserable, not her!!! Grrrrrrrr.

I'm thinking perhaps I might be able to get better answers and solutions by seeing a Movement Disorder Specialist.

Any thoughts on this? Any referrals would be appreciated.


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Re: Movement Disorder Specialists
Re: Movement Disorder Specialists -- Karen Top of thread Archive
Posted by: Jane
03/28/2004, 23:25:25

RE: MG Diagnosis. My curent doctor used a CT Scan of my thymus to rule out MG. Also, my neurologist said the eye muscle action of BEB and MG are the exact opposite: inactive vs. overactive.
Of course the first GP I saw was positive I had MG.

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Re: Movement Disorder Specialists
Re: Movement Disorder Specialists -- Karen Top of thread Archive
Posted by: APhair
03/29/2004, 11:26:33

Karen, I cannot help you with locating a movement disorder specialist in your area as I am from the East coast. I can tell you however that it is a goodidea to at least eliminate the possibility that you have Myastemia Gravis. Actually, I am surprised that your primary care physician didn't ask that you do that originally. I can remember that before I have my first Myectomy, my primarary care Doctor insisted that I see a different Neurologist just to get an opinion and rule out whether I had MG. It was strange in that the Neurologist that I went to was a young doctor who had studied Blepharospasm and was goiing to major in that area of treatment but he decided that since there were so little patients that he probably couldn't make a living at it. He moved into a more general Neurological course or whatever that might be. Anyway, he was the one who not only ruled out the MG, but wrote a ral nice letter to my Primary Care Doctor explaining all about BEB and that in his mind, he felt that I was totally disabled by it and probably would never be able to work again because of the severity with which I had it. I think up until htat point, my GP did not totally believe all that I telling him as he was getting little reports other than the fact that I was getting Botox injections from my Neuro-Opthalmologist. Since then, I have never had any issues with insurance or anything...Alan

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