BEB


Posted by mike woodhouse , Dec 01,2001,10:23   Archive
Thank you all for your kind and thoughtful comments. I understand alot more about this condition today then I did yesterday. Three things stand out in your posts. Finding the right Doctor seems to be the main concern. I have to go to Miami to get the Botox. Thats 100 miles each way for me. Not one Dr. in the Keys that does Botox. At least the next time I go in for treatment I will have a plan and some intelligent questions to ask. This movement center I go to is such a busy place you got your 15 mins. and you had better make the most of it. I'm ashamed to say that I don't even know how many units of Botox I received or the exact areas that were shot. No one told me and I didn't know to ask.

Second, Stress seems to play such a big part.I sure don't want to load up on meds. I do take a small amount of xanax. Any ideas?

Third, The breathing, shortness of breath, seems to be about 50-50 in your comments whether it has anything to do with BEB. I can only say that I have it and it seems to come and go with the eyes. I did the full work up with the heart and lungs & everything is OK????.

Thanks again for your comments. Mike Sorry folks it's 75




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Re: BEB

Re : BEB --- mike woodhouse
Posted by Dee in OR , Dec 01,2001,12:38 Top of Thread Archive
Hi Mike,

Welcome to our little world! If you are a Veteran and have a disability rating of 10% or more, or retired military, you can get your botox through the VA and it will only cost you $2.00. It might take a while to get into the system but once you get in, you're in. Is there a VA Hospital near the Keys? I get my botox at the VA in Portland Oregon.

I have learned so much from the folks on this BB and the dystonia BB. My doctors are amazed at how much I know about this disorder and all the meds, etc. And I learned it all here! So stick around and by the time you go back to your doctor, you'll have a list of things to ask and talk about. And DEMAND more than 15 minutes - you are worth it!

Dee in OR




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Re: BEB

Re : Re: BEB --- Dee in OR
Posted by Virginia , Dec 01,2001,13:20 Top of Thread Archive
Dee,
I go in for botox Monday. My doctor gives botox ONE day a MONTH. Monday he will inject 70 patients. You don't get much time with the doctor when he's seeing that many people. I travel 100 miles each way to see him and he's the closest - also received an award from the BEBFR at the last conference, so he's not too bad a doctor. I don't like it, but my options are limited right now.
Virginia in AL



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Re: BEB

Re : Re: BEB --- Virginia
Posted by kathy , Dec 02,2001,06:34 Top of Thread Archive
gosh, virginia, that's a long way to travel. you have a support group in huntsville, do you ever go to their meetings?



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Re: BEB

Re : Re: BEB --- kathy
Posted by Virginia , Dec 02,2001,16:54 Top of Thread Archive
Yes, I do go to support group meetings. We have them quarterly. Many of the people in the support group go to the same doctor I do.



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Re: BEB/virginia

Re : Re: BEB --- Virginia
Posted by kathy , Dec 03,2001,06:56 Top of Thread Archive
that must be great. are there quite a few people who attend these and can share their experiences?



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Re: BEB/virginia

Re : Re: BEB/virginia --- kathy
Posted by Virginia , Dec 03,2001,16:39 Top of Thread Archive
The size varies - anywhere from 8 to 15 or so (some are usually caregivers). We meet on a Sunday afternoon. Sometimes there is a speaker and sometimes we just visit and compare notes. I enjoy getting together with them and sharing experiences.

Virginia in AL, just back from B'ham and Botox




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Re: BEB/virginia

Re : Re: BEB/virginia --- Virginia
Posted by kathy , Dec 04,2001,06:55 Top of Thread Archive
i would too. there is no support group close to me. the closest one is in athens, ga. too far away and noone would drive me. that's why this bb is so important to me.



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Re: Kathy

Re : Re: BEB/virginia --- kathy
Posted by Vicky Johnson , Dec 05,2001,13:01 Top of Thread Archive
Kathy,
If you don't mind me asking, where are you located? In your post you said the closest support group to you was Athens,GA. I live in south GA and just wondered if you live south of Athens.

The closest support groups to me are in Jacksonville, FL and around Atlanta. I would love to find one close enough to drive to. I could go to Athens if I knew when they met.

Thanks,
Vicky J




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Re: Kathy

Re : Re: Kathy --- Vicky Johnson
Posted by kathy , Dec 05,2001,13:30 Top of Thread Archive
i live in norcross, ga, which is a suburban area northwest of atl. do you have BEB? i can't remember any of your posts.



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Re: BEB

Re : BEB --- mike woodhouse
Posted by kathy , Dec 04,2001,06:58 Top of Thread Archive
i can't remember if anyone mentioned the meige syndrome to you, which is sometimes a part of this disorder. or spasmodic dysphonia. there are quite a few recent postings and questions about this.



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Re: BEB/Kathy

Re : Re: BEB --- kathy
Posted by mike woodhouse , Dec 04,2001,09:19 Top of Thread Archive
Only that it is possible that BeB could lead to other problems.Thats why I asked if shortness of breath is all part of this.



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Re: BEB/Kathy

Re : Re: BEB/Kathy --- mike woodhouse
Posted by kathy , Dec 05,2001,05:20 Top of Thread Archive
yes for a lot of those on this board it is or breathy speech, or other manifestations. how long have you noticed this? with all the wild wind you have had there, could it possibly be aggravated by a red tide? i hope you don't have any shark stories to tell us.



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