Is BEB always progressive? Some good news.


Posted by Delaine Inman , Jul 30,2001,10:42   Archive
At my support group July 22 there were 2 new people who were there who had BEB 20 and 30 years. The one who had it for 20 years sat with her eyes closed for 3 years then had an upper myectomy and has had 17 pretty good years. She does not take Botox or medications for BEB and she has not developed Meige. Driving bothers her so she doesn't do that, but other than that she says she has not let it stop her from doing anything else. Her daughter takes her everywhere and they are very active in their community and church. The other person has had it for 30 years and gets Botox every three months since 1987 and just recently started getting some in her upper jaw and nose, but she looked great. I just thought that was very encouraging to those who are newly diagnosed and wonder does it progress with everyone and how fast? I also have 2 who attend and see the same movement disorder specialist and their Meige is so bad that the BEB has become insignificant. They both have had BEB for over 10 years and Meige for the last 5 and it is progressing to the point it is affecting speech, breathing and swallowing and they get Botox from eyes to neck. It just goes to show how different everyone is with this disorder.



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