Re: BEB |
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
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
gosh, virginia, that's a long way to travel. you have a support group in huntsville, do you ever go to their meetings?
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.
that must be great. are there quite a few people who attend these and can share their experiences?
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
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.
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.
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.
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.
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.
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.