Posted by: KayT ®
09/09/2003, 15:09:19
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I'm not sure if the mouth and jaw problems aren't worse than the BEB. I experience hoarseness on a daily basis,constant pressure from the soft palate and difficulty clearing my throat and swallowing. Does this sound familiar to you or to anyone reading this BB? I've been diagnosed BEB/Meige for a year and can no longer drive or work. I'm due for another round of BOTOX next week and two of my doctors are suggesting partial myectomy. I take Klonopin and Cogentin and am not sure that anything is working right now.
Best, Kay
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Posted by: Junebug ®
09/09/2003, 18:57:24
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I have had the hoarseness (what I call my sexy voice) :o) for a long time. I had it when just one eye was involved. Now I have both and my face has hurt so bad today. I hope he gets the shots to work tomorrow. Also I am going to ask about the meds...Klonopin, etc. He may not want to give me anything because I take so much for my Lupus and RA, etc.This not driving is the pits. I have been on disability since 1987 for the Lupus but the not driving is new to me. What is the difference is a partial and complete myectomy?
I wish you the best. Thanks for answering me. Joyce
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Posted by: KayT ®
09/09/2003, 15:09:37
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I'm not sure if the mouth and jaw problems aren't worse than the BEB. I experience hoarseness on a daily basis,constant pressure from the soft palate and difficulty clearing my throat and swallowing. Does this sound familiar to you or to anyone reading this BB? I've been diagnosed BEB/Meige for a year and can no longer drive or work. I'm due for another round of BOTOX next week and two of my doctors are suggesting partial myectomy. I take Klonopin and Cogentin and am not sure that anything is working right now.
Best, Kay
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Posted by: Ann Doyle ®
09/09/2003, 17:29:49
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I have everything you said. Ususally when it goes down the face, they call it Bleph / Meige syndrome. My face muscles hurt from being flexed so much. I sometimes get botox in my jaw. I also get it in my upper neck.
Like someone else said, I sometimes have swallowing too. You are not alone. Work with your DR. Pay attention to where he is putting the shots. Tell him you want a map of your face. This tells what muscles are getting shots and how much. Feeling lousy, Leaving for full myectomy a week from Sun. and botox is all worn off. Both toilets btoke plus one pipe, Son came home from the Ukraine and lady came to put up wall paper and I am blind most of the time today. Just one of those good old days. Ann Doyle
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Posted by: Junebug ®
09/09/2003, 18:54:37
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Bless your heart. I will be thinking of you with your surgery. How long did you put up with this mess before deciding on the surgery?
Do you know about the sunglasses?I lose my voice a lot. I am back on Prednisone for my Lupus and it has helped my voice some. I will ask about the mapping. Thanks Ann. I hope you feel better soon and that the surgery goes well. Keep in touch.
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Posted by: Mary, upstateNY ®
09/10/2003, 14:35:58
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Ann - Hope your day tomorrow (or even today!) gets better. Glad your son made it home, and sorry about the lousy plumbing problems. Good luck with your myectomy. Keep us informed! Write down a list of questions for the dr. - You (we) are bound to forget some if not written down! Mary
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Posted by: JEAN/NY ®
09/09/2003, 19:14:53
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Junebug, I just ordered my FL 41 tinted glasses but I have not received them yet. You can go to knightonoptical.com to check it out. It's in Utah. Mine are perscription so I had to send my frames and the perscription from my dr. The rose tint is supposed to help with florescent lights. Good luck, Jean in NY
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Posted by: Junebug ®
09/10/2003, 02:01:15
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Thanks. Since I am up not sleeping, dreading tomorrow, I guess I will shop for glasses. :o) I appreciate your answering me.
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