Good news/bad news


Posted by Delaine Inman , Oct 22,2001,10:32   Archive
I had the BEB Support meeting yesterday and the doctor who came was wonderful and works with 2 other eye docs and they give a lot of Botox. He told me some interesting things I hadn't heard about Botox. I had heard people say that since Allergan started making Botox in 1989 they felt they weren't getting as good of results and the company and docs just thought they were getting immune or the disorder was getting worse and ignored them. Yesterday this speaker said that they heard so many complaints especially in groups of people who had received it about the same time that they began keeping a log of the lot number and patients name and date of Botox and found a pattern that could not be ignored. He said in 1998 Allergan actually started taking this problem seriously and tried to make some adjustments in quality control, but they still have problems with certain batches(lot numbers) and make Allergan send more at no charge from a different lot number and call their patients to come back in if patients say the Botox hasn't work when they do a follow up phone call 2 weeks after giving the Botox. I just found that so interesting and was so glad he shared that with us. He also said he is furious that Botox costs so much and we all need to complain often and loudly, because the profits for making Botox is very high and something needs to be done about it for those who need it for medical reasons. He was also furious with Medicare that they will only pay for Botox every 91 days( at least in TN and many states) so you can't give a small dose and then bring them back in for more if that wasn't enough or if if doesn't last 91 days the patient has to wait. Like I said I really liked him and he gave a large donation to the group and said he really enjoyed hearing our stories and being a part of the group and would be there for us in any way he could and thanked me for allowing him to come and for starting the group. He had a child playing soccer and had to leave as soon as the meeting was over so he could go see the last part of the game. I thanked him profusely for giving up his family time for our group and told him to come back any time he could.

On a whinning note from me.....I drove myself to Nashville to the meeting, because both my husband and daughter worked Sat. night. I did ok getting there, but made it 30 minutes (half-way home) and the sun was right in my eyes and despite BEB sunvisor, 2 pairs of sunglasses, tinted windows, singing, screaming and will power I had to stop. Luckily, my in-laws live close to where my eyes clamped shut and I had them drive me home and Rusty rode back with them and brought the van home. It made me so mad and then sad. I had to face the fact I just can't be so stubborn and I can not drive that far without backup to take over. I had missed my rest after lunch to get to the meeting by 1:30 to set things up and it was 4:30 by the time I packed everything up and started back home. By that time the sun was down enough and I was driving west with it right in my face. Curses! Anyway I had a small private pity party this morning with my daughter and had a good cry and I'm feeling better, but still...It was such a disappointing, frustrating experience. My in-laws are 83 and 79 and it seems so upside down to have to ask them for help when it should be the other way around. More Curses! Had to vent some more with folks who understand. I may have exceeded my character limit and may be in BB Jail. Love you guys for being here.




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Re: Good news/bad news

Re : Good news/bad news --- Delaine Inman
Posted by Lynn Yarbrough , Oct 22,2001,11:32 Top of Thread Archive
Hey, Delaine,

IT'S ALL RIGHT to have a support group meeting and to be the one who needs the most support.

Sounds like you had a productive meeting, but you know your stress level could not be normal. Just being the hostess with the mostes' is wearing. Next time do what I do -- have the meeting in your home! That way you don't have to drive afterward.

Oh -- one piece of advice to all BEB'ers: Don't live due west of your workplace -- you get the sun in your eyes both going and coming!

--- Lynn




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Re: Good news/bad news

Re : Good news/bad news --- Delaine Inman
Posted by Cynthia , Oct 22,2001,11:50 Top of Thread Archive
Thank you so much for posting that, Delaine. I forwarded it to the Peoria support group coordinator to share at our meeting on Saturday (10/27). You are a dedicated leader to go through all you did for your group! Glad that you did finally get home safely and were able to have the little party with your daughter.
Cynthia in IL who enjoyed visiting Nashville last year just after Thanksgiving (to see all the beautiful Christmas lights) :-))



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Re: Good news/bad news

Re : Good news/bad news --- Delaine Inman
Posted by Edith Nalepa (edith nalepa,Edith Nalepa), Oct 22,2001,13:16 Top of Thread Archive
Hello Delaine, It sounds like you had a good support meeting. The Doctor did give you all some good information, and I learned a few new things from your post.If your in laws are like my husband and I, who are in our 70's, they were happy to be able to help you, we are always happy and willing to help our family, it makes us feel good.Edith in Fl.



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Re: Good news/bad news

Re : Good news/bad news --- Delaine Inman
Posted by Dee in OR , Oct 22,2001,18:05 Top of Thread Archive
Delaine,

Sounds like you did a great job for the support meeting. And then YOU NEEDED SUPPORT! How awful! But really, it is sad and frustrating and madening and every other "ing". Sorry you had to go through that Sister. I'm here for you and I know you're there for me. That's what's so great about this BB.

Hugs & Namaste,
Dee




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Re: Good news/bad news

Re : Good news/bad news --- Delaine Inman
Posted by Christel-California , Oct 22,2001,20:29 Top of Thread Archive
Delaine, thank you for sharing your support groupt meeting. Sounds like you did a great job. I found that bit about Botox quite interesting, learned something new again.
As for you having to ask for help - I think since you are a very independent person and perfectionist, you find it difficult to ask for help, but I'm sure your in-laws were happy to be of assistance, being familiar with your disorder - or did they grumble?
But go ahead, curse and whine away, we love to hear it, that's what we are here for. Anytime you want a pity party, we are ready. :-)

Christel in Ca. who also doesn't like to ask for help




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Re: Good news/bad news

Re : Re: Good news/bad news --- Christel-California
Posted by Delaine Inman , Oct 22,2001,20:36 Top of Thread Archive
My in-laws never complain about anything to anyone, but they do talk about people behind their back often and make me a little reluctant and paranoid. But most of all you hit the nail on the head...I'm independent, stubborn, wanted to be able to get there and back so bad and felt like I had failed and us perfectionists just hate to fail at anything we start to do! Thanks everyone for understanding me and the situation and your comments help as always. Feeling better already.



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Re: Good news/bad news

Re : Good news/bad news --- Delaine Inman
Posted by Sally - in - Idaho , Oct 22,2001,21:36 Top of Thread Archive
You did everything right, Delaine. It's so hard to always be asking for help, or to struggle along refusing to ask. Sounds like you had a good meeting and I'm sure that most of that was due to your preparations. Just use up all the "characters" you want to here and complain as much as you want. Our shoulders are broad and soft.

Sally in North Idaho where it's raining and gloomy




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Re: Good news/bad news

Re : Good news/bad news --- Delaine Inman
Posted by Joanne Matuzas , Oct 22,2001,22:30 Top of Thread Archive
Delaine, sounds like it was a great meeting--and look how we all learned something new about the Botox as a result. I am sorry the day ended with an eye shutdown. Isn't it the nature of this disorder to throw in
a glitch like that!! If anyone can understand, it's the folks on this bb who continue to learn how to deal with the frustration of this disorder. I'd like to emphasize the good news part of this post and thank you for sharing with us. I have not yet had a total eye shutdown
as is spoken about here, but have had my share of frustration in other ways from this disorder. The latest was when I was helping with a presentation at the office and my breathing decided to go ballistic which affected my speaking and created involuntary noises. My partner finished up for me. Let's give ourselves credit for the bravery of keeping on and the smarts to know when to ask for help. Joanne M. San Diego, CA



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Re: Good news/bad news/joanne

Re : Re: Good news/bad news --- Joanne Matuzas
Posted by kathy , Oct 24,2001,03:25 Top of Thread Archive
gol, that breathing thing would be majorily upsetting! were you embarrased or anything? you'd have to be pretty brave to go on after that, did you have to deal with a whole bunch of explanations to people?



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Re: Good news/bad news/joanne

Re : Re: Good news/bad news/joanne --- kathy
Posted by joanne matuzas (Joanne Matuzas,joanne matuzas), Oct 24,2001,15:30 Top of Thread Archive
Thanks for your concern, Kathy. Folks at my office know about my health and that I have a neurological disorder that kicks up at times
and they are very understanding about it. My partner finished up.
Part of it was my own fault since I think I messed up with my med dosage that morning. I think that is what is so exasperating about this
disorder. You can be fine and then wham--it hits. I think I am doing
a much better job accepting it and knowing retirement will not be that far down the line for me. :<) Joanne M. San Diego, CA



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Re: Good news/bad news/joanne

Re : Re: Good news/bad news/joanne --- joanne matuzas
Posted by kathy , Oct 25,2001,06:17 Top of Thread Archive
yes it's unpredictability is unsettling on a daily basis. you can be fine for awhile AND THEN.....



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Re: Good news/bad news

Re : Good news/bad news --- Delaine Inman
Posted by Lile , Oct 23,2001,00:08 Top of Thread Archive
Delaine,my heart goes out to you nobody really knows what it is all about, unless you`ve been there.We have all been there ,if we are here.Nobody has ever really understood me ,besides my husband.He sees me with my eyes closed or holding them open and wearing a visor day and nite.I have traveled all around the world on my own . Now sometimes I can`t get to the store, unless I hold my eye brows up!Faith and Strength Lile,Tx.



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Re: Good news/bad news/lile

Re : Re: Good news/bad news --- Lile
Posted by kathy , Oct 24,2001,03:27 Top of Thread Archive
oops sorry, lile . you're a female. i've never heard that name for a girl, i guess.



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Re: Good news/bad news/lile/Kathy

Re : Re: Good news/bad news/lile --- kathy
Posted by Lile , Oct 24,2001,13:11 Top of Thread Archive
Kathy,That`s OK.I`ll try to pronouce it for you.Take Daylily,the LIL in it with a - short e - at the end.So the - i - is long e - and the -e- is short e- as in education.Gee Weez,I didn`t think I`d be mistaken for Lyle Lovitt.LOL LOL.I hope I made myself clear,a teacher I`m not. Lile,Tx.



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Re: Good news/bad news/lile/Kathy

Re : Re: Good news/bad news/lile/Kathy --- Lile
Posted by Sally - in - Idaho , Oct 24,2001,20:42 Top of Thread Archive
Is it "Lee-la"?

Sally




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Re: Good news/bad news/lile/Kathy

Re : Re: Good news/bad news/lile/Kathy --- Sally - in - Idaho
Posted by Lile , Oct 24,2001,22:27 Top of Thread Archive
Lee is right ,if the -a-is like a in apple -right .If -a- is like singing la la la la la,la la la la wrong. Got it ?



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Re: I'm totally confused

Re : Re: Good news/bad news/lile/Kathy --- Lile
Posted by Shirley-Arkansas-USA , Oct 24,2001,22:57 Top of Thread Archive
Well, I don't know about anyone else, but I am totally confused. Can we just call you something else?

Shirley- like Surely




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Re: I'm totally confused

Re : Re: I'm totally confused --- Shirley-Arkansas-USA
Posted by Lile , Oct 24,2001,23:32 Top of Thread Archive
How about just writing it and not saying it. Or say it like the Lily in Daylily.CLOSE ENOUGH.Lile --Lily



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Re: Good news/bad news/lile/Kathy

Re : Re: Good news/bad news/lile/Kathy --- Lile
Posted by Sally - in - Idaho , Oct 25,2001,00:00 Top of Thread Archive
Nope!



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Re: Good news/bad news/lile/Kathy

Re : Re: Good news/bad news/lile/Kathy --- Sally - in - Idaho
Posted by Lile , Oct 25,2001,00:29 Top of Thread Archive
OK,here we go .Li=Lee le=la as in lantern Leelantern ,Tx. LOL LOL



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Re: Good news/bad news/lile/Kathy

Re : Re: Good news/bad news/lile/Kathy --- Lile
Posted by kathy , Oct 25,2001,06:28 Top of Thread Archive
okay Lily. it's still a pretty name. just glad i know your gender now so i don't further embarrass myself.



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Re: Good news/bad news/Lile

Re : Re: Good news/bad news/lile/Kathy --- Lile
Posted by Christel-California , Oct 25,2001,10:23 Top of Thread Archive
Lile, I managed to pronounce your name correctly, though I wasn't certain that you would pronounce it that way.
It is the way you would say it in German.

Christel in Ca. who came from Germany in another life time, eons ago.

--modified by Christel-California at Thu, Oct 25, 2001, 10:31:50




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Re: Good news/bad news/lile/Kathy

Re : Re: Good news/bad news/lile/Kathy --- Lile
Posted by kathy , Oct 25,2001,06:13 Top of Thread Archive
like Lilla, very pretty name. have never heard it.



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Re: Good news/bad news

Re : Good news/bad news --- Delaine Inman
Posted by Ann Doyle , Oct 23,2001,06:03 Top of Thread Archive
Delaine, I go to Nashville for my Botox. Would the Doctors name be Thomas Davis by any chance and if not could you tell me his name in case I need another Doctor? Ann D.



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Re: Good news/bad news

Re : Re: Good news/bad news --- Ann Doyle
Posted by Delaine Inman , Oct 23,2001,17:37 Top of Thread Archive
His name is Brian Biesman and he practices with Wesley and Klippenstein. He is an Ophthalmologist/surgeon. I know several people who go to Tom Davis, he is one of the best movement disorder neurologists in the state. I've never met him. He says he will speak at our group, but he hasn't given me a date yet. I have July and Oct. open for next year.....encourage him to sign up. I would love to meet you.



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Re: Good news/bad news

Re : Re: Good news/bad news --- Delaine Inman
Posted by Ann Doyle , Oct 23,2001,17:50 Top of Thread Archive
I would like to meet you too. All of your post have interested me. When I'm in Nashville, I am at my worst and don't want to see or be seen by anyone. What city did you say you live in or did you?
Where do you have your support meetings and when? Ann D.

--modified by Ann Doyle at Tue, Oct 23, 2001, 17:55:28




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Re: Good news/bad news

Re : Good news/bad news --- Delaine Inman
Posted by Shirley-Arkansas-USA , Oct 23,2001,17:42 Top of Thread Archive
Delaine, I still want to come to your support group meetings. Could you move a little closer to where I live, please? Thanks for the information. It is nice to hear things that I haven't heard before. I appreciate you sharing it with us.

I'm sorry that you had difficulty driving home but oh, so glad that you were able to get someone to rescue you. I'm also glad that you had the good sense to pull over and not to attempt what you knew that you couldn't do. You know that most of us can relate to your situation. It always hurts when you really want to be able to do something and then this smacks you in the face and says "NO". A good cry was in order.

Right now, I'm thinking to myself, I have to fix supper for my husband and brother. My brother is in visiting and is checking on his farm that is here that he has up for sale. My eyes have been doing really crummy the last few days and I really don't think that I can fix supper without crying. So I'm thinking, do I try it and possibly wind up crying or do I say I "can't" do it which would also make me cry. I hate it when I can't do things. I hate to admit that I can't. I really didn't mean to complain but I was just verifying the fact that, yes, we all can understand how hard and frustrating it was for you to have to call someone to come get you.

I'm glad that you are safe my dear friend. That is what is important.
Talk about it at your next meeting and the frustration and how people cope with it.

Love ya,
Shirley




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Re: Good news/bad news

Re : Re: Good news/bad news --- Shirley-Arkansas-USA
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Oct 23,2001,18:18 Top of Thread Archive
Delaine and Shirley, I can idenify with both of you. I too am independent and HATE to ask people for help. I feel like I am a prisoner in my own home. Yesterday my eyes were open so I decided to go to Wal-Mart All BY MYSELF. I had asked my husband to take me on Sunday, because the Wal-Mart we went to on Saturday night was not a Super Wal-Mart and I needed some things in the grocery section. He told me no - so Monday I drove myself. My eyes closed a few times and I prayed a lot but I made it there and back (approx 10 miles each way). It felt so good to just go by myself and just leisurely look. I came home and worked in the yard. I just had a very good day. At 2:30 am I woke up with that dry scratchy, gritty eye (left eye). I had put ointment in both eyes and had a washcloth and eye mask on. I don't know what happened except maybe working in the yard and it was windy dried my eyes out but the ointment should have helped. I put more ointment in my eye in the dark because I could not get my eyes open when I turned the light on. I have laid on the coach all day today because my eye hurt so much. and I had a bad headache. O well, another day in the life(?) of a person with BEB.

Joyce in NC where the temp yesterday and today got up close to 80 with a warm breese rustling through the trees. Spring in Fall - perfect day.

I am not saying all this for you to feel sorry for me. It's just seems we have a good day and then a bad day. It is so frustrating. Shirley I know how you feel about having to cook for family and really don't feel like it because our eyes are clamping shut. I too have cried because I had to do it. As women we have to take care of everyone and somedays I want someone to just take care of me too.




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Re: Good news/bad news/joyce

Re : Re: Good news/bad news --- joyce whitt/NC
Posted by kathy , Oct 24,2001,03:34 Top of Thread Archive
joyce, that gritty scratchy feeling is indeed really, really painful. all of us should be very careful of our eyes in windy weather as i know stuff gets in them.



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Re: Good news/bad news

Re : Re: Good news/bad news --- Shirley-Arkansas-USA
Posted by catherine pender , Oct 23,2001,18:30 Top of Thread Archive
Shirley

I am right with you. Crying all the time. Some from pain which is searing and some from depression. I am now trying some homeopathic stuff to help with the depression. Just started today so will let you know how it works. It is called Rescue Remedy. At this point I am willing to try anything, spend anything.

Catherine who is sick and tired of feeling SICK AND TIRED!!!!!




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Re: Good news/bad news

Re : Re: Good news/bad news --- catherine pender
Posted by catherine pender , Oct 23,2001,18:35 Top of Thread Archive
It is so good to be able to say these thing we feel to others who are going through the same thing. I wondered if its in the air!

Catherine, who has a feeling a pity party is in the works!




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Re: Good news/bad news

Re : Re: Good news/bad news --- catherine pender
Posted by Delaine Inman , Oct 23,2001,18:45 Top of Thread Archive
Thanks every body for joining in with your own stories and understanding attitudes. How do people make it without soft/strong shoulders to lean on???



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Re: Good news/bad news

Re : Re: Good news/bad news --- Delaine Inman
Posted by r coutant , Oct 23,2001,19:56 Top of Thread Archive
i've read all the posts under the good news/bad news,
and i've only got one thing to say - all of you are
giving it your best shot. that is all anyone can do.
no more, no less.

rhonda




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Re: Good news/bad news/rhonda

Re : Re: Good news/bad news --- r coutant
Posted by kathy , Oct 24,2001,03:36 Top of Thread Archive
good thought rhonda, perhaps we should all remind ourselves of this!



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Re: Rescue Remedy

Re : Re: Good news/bad news --- catherine pender
Posted by June in Toronto (June Floyd,June in Toronto), Oct 24,2001,12:21 Top of Thread Archive
Catherine, I use rescue remedy when I get my botox injections - it seems to calm me down. I've never heard of it being used continuously for depression though. Kava Kava is excellent for depression - no side affects like St. John's Wort. DOHOPE youfeel better real soon.

June in Toronto where its such a mild day although storms are forecast.




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Re: Rescue Remedy

Re : Re: Rescue Remedy --- June in Toronto
Posted by joanne matuzas (Joanne Matuzas,joanne matuzas), Oct 24,2001,15:31 Top of Thread Archive
June, I was curious about the negative side effects you refer to with
St. John's wort. Thx. Joanne M. San Diego, CA



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Re: St. John's Wort

Re : Re: Rescue Remedy --- joanne matuzas
Posted by June in Toronto (June Floyd,June in Toronto), Oct 24,2001,16:50 Top of Thread Archive
Light sensitivity is a side effect of this herb, Joanne. That's something most of us don't need any more of - right?

Best wishes. June in Toronto who has beb/meige




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Re: St. John's Wort/ joanne and june

Re : Re: St. John's Wort --- June in Toronto
Posted by kathy , Oct 25,2001,06:20 Top of Thread Archive
you are supposed to avoid exposure to the sun with it also. i've never taken it however.



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Re: Rescue Remedy

Re : Re: Rescue Remedy --- joanne matuzas
Posted by Evelyn , Oct 25,2001,00:09 Top of Thread Archive
St. John's Wort shouldn't be taken two weeks prior to to surgery because it can cause heart problems. A friend, who is a nurse, went in for shoulder surgery. When the anestheist asked if she was taking any medication, and learned my friend was taking St. John's Wort, she sent her home. She had to reschedule surgery two weeks later. I took St. John's Wort for depression, but after a time, it worked the opposite...instead of warding off depression, it made me depressed. Same thing happened to the gal who had the shoulder surgery. Needless to say, I don't take it anymore.
Evelyn



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Re: Good news/bad news

Re : Good news/bad news --- Delaine Inman
Posted by Ann Doyle , Oct 24,2001,19:11 Top of Thread Archive
I was very interested in your quality control. It seems so obvious. My first injection I would give a 9, 10 being the best. The only reason I didn't give it a 10 was because it ran out 3 weeks before the next shot which seems reasonable. My second shot I would give a 5. I figured I was one of those people who would build up antibodies in a hurry. Then with number 3, I would rate it and 8. This doesn't make sense and it is from Dr. Tom Davis who is one of the best with a lot of experience. Shot number 4 lasted several hours and I am as bad as I was before my first shot.
I started looking under quality control but
am having some trouble because of my eyes. The first response was from a cosmetic co.
"In terms of quality control for Botox, I don't know if you are asking for what is done at the office level or the manufacturer level. In terms of the offices, the botox is stored in the freezer to keep the botox cold-which is required for it's preservation. The Botox is drawn up from a bottle which typically contains approximately 4 doses of Botox. If this is not the information you are looking for, you can contact Allergan which is the comapny that manufacture Botox. You can probably look them up on the web."
Cindy Lancaster

I would like to know the potency 0f each bottle. Also does it make a difference if you get the first, second or third shot out of the bottle.
It would be interesting if each person getting botox was given the batch number on a postcard and then after 8 weeks or so be asked to give it a number from 1 to 10 for effectiveness. It might prove interesting and helpful. Ann Doyle.




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Re: Good news/bad news

Re : Re: Good news/bad news --- Ann Doyle
Posted by Lynn Yarbrough , Oct 24,2001,22:52 Top of Thread Archive
>I would like to know the potency 0f each bottle. Also does it make a difference if you get the first, second or third shot out of the bottle.

Each bottle contains 100 mouse units in powder form, frozen. After thawing, it is dissolved in normal saline before injection. If your Dr. has a license, he knows it is improper to share doses among patients; you get your needs met from the bottle you pay for and the rest of the contents of the bottle is destroyed. The potency of each shot is, for all practical purposes, exactly proportional to the volume of solvent injected. AFAIK, individual shots are multiples of 2.5 m.u.

--- Lynn




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Re: Good news/bad news/ann

Re : Re: Good news/bad news --- Ann Doyle
Posted by kathy , Oct 25,2001,06:24 Top of Thread Archive
the postcard idea is interesting, especially if one was having doubts about the potency. it's always good to be aware if something seems drastically different.



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