BEB


Posted by dorothy long , Apr 25,2002,19:06   Archive
I was diagnosed with beb in Dec, and like everybody else at times it is very hard to understand. May 2 I will get my third set of injections of botox, if that helps. I was thinking of not having the injections just to see how bad my eyes will get. Before I had botox injections I would have good days the same as with the botox. I have never been on medications. My doctor is a Orbital & Oculoplastic surgeon.

Thanks Dot




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Re: BEB

Re : BEB --- dorothy long
Posted by Shirley-Arkansas-USA , Apr 25,2002,20:57 Top of Thread Archive
Hi Dorothy. If you don't believe that the BOTOX is helping, give it a trial without it. That's easy enough to do and no harm will be done. You might consider seeing a Neurologist that is a movement disorder specialist. I suggest that as they are more likely to prescribe medication than the Ophthalmologists. And sometimes medications help. I actually like seeing a combination of the two. I see a Neuro-Ophthalmologists for my injections and a movement disorder specialist to manage my medications. Works for me.

I also have good and bad days whether I take the BOTOX or not but my bad days are much worse when I don't take it.

Let us know how you are doing. Your name looks familiar-have you posted before?

Shirley in Arkansas with BEB/Apraxia




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Re: BEB

Re : Re: BEB --- Shirley-Arkansas-USA
Posted by dorothy long , Apr 26,2002,07:07 Top of Thread Archive
Hi Shirley in Arkansas, I am Dorothy from Butler, Pa. and was very happy with your reply. I guess I should see a neurlogist, but the one I tried to make an appointment never returned my call, so I have been seeing a opthtomolist. He has helped, but I feel that I can't really talk to him. He gives you no answers, but maybe he doesn't have them. I try to be patient but sometimes it just don't work. My eyes are more sensitive than dry, I only use eye drops when I get up in the morning, but they go closed at times and I lift them open to see where I am going. As far as the botox Iam thinking about that.
Talk to you later Dot



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Re: BEB

Re : Re: BEB --- dorothy long
Posted by irene sieger , Apr 26,2002,12:27 Top of Thread Archive
Dorothy Hi my name is Irene and I just joined the BEB support group. I went to see a number of eye specialist before I saw a neurlogist and was told about been a blepharospasm . I knew nothing about the disease and My neurlogist recomented the Botox injections rather than any oral medications and I got my first shots back in March 7,2002 and only a few days and my eyes were open. And I didn't have any questions for her but I'm new to this disease. I'm learning alot from the support group and I will have questions for my Doctor next time around. I have an appointment with her next week.Hope you find the right Doctor beacuse some doctors don't know anything about this disease. I am very sensetive to the bright lights and have dry eyes and at first I had my eyelids feel very heavy like I wasn't getting enough sleep. Untill my eyes closed completly than I began to panic.Take care we all know its a terrible feeling.

Irene




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Re: BEB

Re : BEB --- dorothy long
Posted by Delaine Inman , Apr 26,2002,09:11 Top of Thread Archive
Everybody has to do what is right for them. The first year I saw no positive results with Botox, so I had a partial myectomy which gave only slight improvement. Then a year ago I started the Clonazepam at a low dose and found the Botox began to help the hard squeezing spasms that were so painful. I went 5 months this last time without Botox, but when I crashed it was sudden and they told me no appointment was available for a month. It was so bad I didn't think I could stand it so I got in touch with the doctor and she had me in for Botox in a couple of days. I would have been in a pickle if I had to wait 6 months. I too have good and bad days no matter when I've had Botox, but the crash was on a scale of too painful to endure and function. So I learned something from the experience. I did get the least amount of Botox I've ever had and it seems to be working just as well. I think I could have done with less on the right eye, because it has felt really dry and has never been as bad to have the really painful spasms, so I may ask for even less around that eye next time. You really do have to experiment and play around with what is best for you.



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Re: BEB/Dot

Re : BEB --- dorothy long
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 26,2002,10:17 Top of Thread Archive
Dot, many of us require both medications and the botox to help control the muscle spasms. After your injections you should also use the eyedrops very frequently during the day to prevent dry, scratchy eyes.



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