Blepharospasm Bulletin Board

STILL NO BOTOX!!
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Posted by: Dee in OR
11/24/2003, 08:06:43


It has been 4 months and since my last shots and I still don't need any botox! Oh JOY OF JOYS!

DeeOR




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Re: STILL NO BOTOX!!
Re: STILL NO BOTOX!! -- Dee in OR Top of thread Archive
Posted by: Delaine Inman TN State Coordinator
11/24/2003, 10:53:19


That is wonderful. May you never need it again.



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Re: STILL NO BOTOX!!
Re: STILL NO BOTOX!! -- Dee in OR Top of thread Archive
Posted by: Cynthia
11/24/2003, 14:19:14


Dee,

Rejoicing with you! That is GREAT NEWS!

Cynthia in IL where it's COLD and WINDY today - brrrrrrr!




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For Cynthia re your friend Paula
Re: Re: STILL NO BOTOX!! -- Cynthia Top of thread Archive
Posted by: Debbie
11/25/2003, 21:52:51


Hi, Cynthia,
Was hoping to "run into you" in the chat room this evening....anyway, just wanted you to know that I phoned your friend Paula last week but her answering machine was on so I left a message but not my number because my mom had just been hospitalized and I was expecting a call from the doctor and didn't want to get other calls just then.....I tried again this afternoon, and again the machine answered, so this time I left my phone number as well. Haven't heard back...just wanted you to know that I tried! Hope it's the right number--it's a man's voice.

Yes, it is cold.......
Happy Thanksgiving,
Debbie




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Re: For Cynthia re your friend Paula
Re: For Cynthia re your friend Paula -- Debbie Top of thread Archive
Posted by: Cynthia
11/26/2003, 08:05:13


Thanks, Debbie. Paula emailed me and said she was sorry she missed your calls, but was going to call you tonight. I had a meeting last night so I missed the chat room. Will be there next week Lord willing :-).
HAPPY THANKSGIVING to everyone!

Cynthia in IL waiting for the "kids" to get here :-)




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Re: STILL NO BOTOX!!/dee
Re: STILL NO BOTOX!! -- Dee in OR Top of thread Archive
Posted by: Kathy in Atlanta
11/24/2003, 15:14:20


You are soooo lucky!!!!!! Does anyone know why this is happening?



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Re: STILL NO BOTOX!!/Kathy
Re: Re: STILL NO BOTOX!!/dee -- Kathy in Atlanta Top of thread Archive
Posted by: Dee in OR
11/24/2003, 15:22:00


Well, I can guess. I was under so much stress with my mother living here with us, so she moved back to the east coast in mid-September to live with my brother. Also, my doc said maybe the blephs are in remission. He said 10-15% go into spontaneous remission. And maybe I just don't need botox every three months. Maybe I will need it next month - who knows? But for now, it has been 4 months and I am so grateful.

Cheers,
DeeOR




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Re: STILL NO BOTOX!!/Kathy
Re: Re: STILL NO BOTOX!!/Kathy -- Dee in OR Top of thread Archive
Posted by: Kathy in Atlanta
11/24/2003, 15:25:45


Hooray !! for you.



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Re: STILL NO BOTOX!!/Dee
Re: Re: STILL NO BOTOX!!/Kathy -- Dee in OR Top of thread Archive
Posted by: Raymond Fudge
11/24/2003, 15:49:41


Dee, I rejoice with / for you, but can not help but be envious. May it continue!!

Getting cold in Alabama, expected low of 28 tonight.




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Re: STILL NO BOTOX!!/Dee and
Re: Re: STILL NO BOTOX!!/Dee -- Raymond Fudge Top of thread Archive
Posted by: Kathy in Atlanta
11/25/2003, 18:54:20


Raymond, you are much more honest than I on this particular matter. Of course who would not be envious if they no longer had to get these injections????



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Re: STILL NO BOTOX!!/Dee and
Re: Re: STILL NO BOTOX!!/Dee and -- Kathy in Atlanta Top of thread Archive
Posted by: Raymond Fudge
11/26/2003, 09:44:04


Even in envy we can all "Rejoice with those that rejoice". I hope Dee continues to stay in remission.



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Re: STILL NO BOTOX!!/Dee and
Re: Re: STILL NO BOTOX!!/Dee and -- Raymond Fudge Top of thread Archive
Posted by: Dee in OR
11/26/2003, 15:20:40


Thank you everyone. I will keep you all posted. I think it is too soon to know if this is actually remission or just needing botox less often. But I did remove a huge stressor from my life and I think that has a lot to do with the improvement. SO GET RID OF YOUR STRESSORS!!

Cheers,
DeeOR




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Re: STILL NO BOTOX!!
Re: STILL NO BOTOX!! -- Dee in OR Top of thread Archive
Posted by: June in Toronto
11/25/2003, 07:15:26


Greatnews, Dee - enjoy it all.

June in Toronto where we had our first (small) snowfall last night - it looks beautiful.




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Re: STILL NO BOTOX!!
Re: STILL NO BOTOX!! -- Dee in OR Top of thread Archive
Posted by: Gayle
11/25/2003, 14:16:14


I am go happy for you and hope that you goodness continues. Can you tell me how many units the DR used? Did he do the eye area only or do you have Meige and get neck shots?

Gayle in GA




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Re: STILL NO BOTOX!!
Re: Re: STILL NO BOTOX!! -- Gayle Top of thread Archive
Posted by: Dee in OR
11/25/2003, 17:26:30


I was getting 35 units and the last time I got botox shots (4 months ago) I only got 30 units around the eyes. I do have some Meige, as well as oromandibular dystonia, but I don't get botox anywhere else except the eye area. I also have medication induced dystonia (multifocal)and had the DBS surgery in 2000, with INCREDIBLE results! However, the DBS surgery does NOT help the blephs. Nor does it help dysphonia, which I don't have, thank the goddesses!

Cheers,
Dee




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Re: STILL NO BOTOX!!
Re: Re: STILL NO BOTOX!! -- Dee in OR Top of thread Archive
Posted by: Ann Doyle
11/25/2003, 17:39:18


I know I have seen


I know I have seen "DBS" surgery before but I can't remember what it is. Could you remind me please. Ann Doyle

D




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Re: STILL NO BOTOX!!
Re: Re: STILL NO BOTOX!! -- Ann Doyle Top of thread Archive
Posted by: Dee in OR
11/25/2003, 20:13:05


Ann,

Deep Brain Stimulation - check out http://www.dystonia-foundation.org/

Cheers,
DeeOR




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Re: STILL NO BOTOX!!
Re: Re: STILL NO BOTOX!! -- Dee in OR Top of thread Archive
Posted by: Shelley
12/28/2003, 17:48:29


Dee - I just found your message about having DBS in 2000. I am considering this - in fact, have an appointment on 1/5 with a surgeon at Scripps in San Diego. I have Meige, and my biggest problem is eating. I am having more and more problems with teeth clenching and am afraid I will have to stop working which I do NOT want to do.

Could you tell me about your experience?
Thanks,
Shelley




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