Posted by: June in Toronto ®
01/02/2003, 10:14:24
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Welcome to the beb bb, Jackie. Sorry to hear you have this disease, but this is a good place to learn more, deal with it and have a few laughs along the way.I've had beb/meige for about 8 years now and do reasonably well with botox injections (90 units) every 3-5 months. People also ask me about the injections - I find they are over and done with so very quickly, that I can bear the pain for that length of time. For me its the side effects that i experience from the botox that I don't like. They can be: double vision, blurred vision, a feeling of barbed wire in my eyes keeping them open with lots of burning pain, sinus, flu-like symptoms and more. Luckily I don't get all these side effects at one time but the ones I do get hang on up to a month. After that I can do a lot of `normal' things except read a good book - how I miss that! I can watch tv and go to a non-flashy movie, drive short distances, so I count my blessings. If you do decide to change doctors anytime get a copy of your injection diagram from your current doctor with units of botox used. This would help another doctor know what works for you. Take care and come back often and let us know how you are. June in Toronto where we are expecting up to 30 cm of snow tonight!
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Posted by: Ann Doyle ®
01/02/2003, 10:14:56
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Jackie, A lot of us travel more than 100 miles to get injections by a DR. who gives them correctly. It's a full day for us, my husband has to drive me because the shots don't last 3 months but I can't get them any oftener. Like you, I go to a Movement Disorder Clinic at Vanderbilt hospital. And like you, I had a sone else, who should be qualifed give them and the difference was terrible.
Isn't it wonderful to find this site. You were very lucky getting a correct diagnosis so quickly. I was told it was all in my head and there was nothing wrong with me. That is pretty typical. It took more than a year, closer to 2 to get diagnosed. Glad to have you join us. Ann Doyle From KY--go to Nashville for shots.
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Posted by: Shirley-Arkansas-USA ®
01/02/2003, 17:09:56
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Hi Jackie and welcome to the bulletin board.
I'm glad that you have a good doctor. That is so very important. If you like him, keep traveling that distance-it's worth it.I was very lucky to have found this site even before my diagnosis was confirmed and treatment started. Hang around and ask and comment on whatever you like. Again welcome to our little group! :-) Shirley in Arkansas with BEB and Apraxia
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Posted by: debbie campbell ®
01/02/2003, 22:27:07
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Hi Jackie,
Wecome to the BB. Sorry to hear you have BEB. I was diagnosed Jan 02 so it has just been a year for me. I too have had good results from the Botox every 3 months although, the last 6 months I have struggled quite a bit even with the injections. My left eye being the worst. It just dosen't want to stay open for me! It's unfortuate so many with BEB have to travel a great distant for their injections. My neurologist is 10 minutes away, actually he's in the same medical building as my family DR. My injections don't hurt however, my last ones given on Dec 20 did hurt more than usual. I received 12 injections this time from my usual 10, now 6 around each eye. Unfortuately, this time I ended up with a hugh black eye. I have never really experienced any bruising with the past injections but this time,I did. A great big shinner, just in time for Christmas pictures! Oh well, as long as I can see, that's what's really important. Very few of my co-workers know I have BEB and that I have to receive injections, so it took some explaining, to many people what had happened. The bruising has just about gone away now.
Take care and I hope your injections continue to be effective for you.
Debbie from London, Ontario
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