Belated note for Delaine


Posted by Joan Mayer , Oct 31,2001,14:55   Archive
Have been reading the BB for sometime, but decided it was time to post a note. I am so very glad that you started and have kept the support group going for us in Nashville. As I mentioned at the last meeting, it has definitely helped me out. THANK YOU!!

Another note about the meeting, When my husband and I left the other day, I was feeling fairly well, but ooohh so envious, as you were driving and so were several others that had been to our meetings. It has been over 6 years since I have been able to drive, and I too was a very independent person. I guess this is one of my main hangups with this disease. I was almost happy, when I read that you had to stop before getting home, but not really. I am so glad that you were able to get home safely. I keep hoping, that if I ever get it figured out as to the right dosage of botox, etc., that I might have a chance to drive again even if for only a short distance.

As Delaine knows, I have had quite a bout with diagnosis and treatment for Blepharospasm. I think I am on the right track now. Again, thanks to Delaine and the Nashville support group.

Also, I do accept this, but I sure don't like it.

Joan




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Hey everyone, welcome my friend Joan to the BB

Re : Belated note for Delaine --- Joan Mayer
Posted by Delaine Inman , Oct 31,2001,22:57 Top of Thread Archive
Joan I'm so glad you posted and I forgive you and understand that you were glad to find out I still have to ask for help whether I like it or not. You have been so faithful to come to the support group and I'm glad you are seeing a doctor now who is trying to help you. If I had something to with that, then ever bit of work I do has been worth it.
Hey everyone, meet and greet my friend Joan. Her husband brings her to the meetings in Nashville.



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Re: Hey everyone, welcome my friend Joan to the BB

Re : Hey everyone, welcome my friend Joan to the BB --- Delaine Inman
Posted by kathy , Nov 02,2001,04:48 Top of Thread Archive
welcome, joan. i haven't driven on the road either for years either and very much miss the independence. the frustration of worrying how you are going to get somewhere is even worse!



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Re: Hey everyone, welcome my friend Joan to the BB

Re : Re: Hey everyone, welcome my friend Joan to the BB --- kathy
Posted by Joann Humphrey , Nov 02,2001,16:30 Top of Thread Archive
Welcome Joan to the BBB. Glad you responded. This is a wonderful support group. I drive very little, stay within a one mile radius of home. My husband was slow to understand but has finally accepted the fact that I'm more dependent on him. I've scheduled a limited myectomy for mid Jan with Dr. Anderson. Hopefully, it'll help enough so I can do more driving. That's what I miss the most.
Joann in Ark. where I enjoyed babysitting with 2 of my grandkids today, ages 4 & 11 months.



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Re: Hey everyone, welcome my friend Joan to the BB

Re : Re: Hey everyone, welcome my friend Joan to the BB --- Joann Humphrey
Posted by coleen dennis , Nov 02,2001,20:37 Top of Thread Archive
Hi Joan,

Welcome to the BB. It's a great bunch with lots of knowledge, advice & great senses of humor. I haven't been on here as much as some of the others as I have only been diagnosed for about 9 months.

I try to get on when I can but my fibromylgia is flaring up and typing is making my arms tired.

There are a lot of things you need to get used to with this "condition" but it is wonderful to have a place to come where you are understood and supported.

Coleen in Central PA who received her packet of memos regarding her current treatment from her doctors for the second opinion at Wills Eye and found it fascinating reading.




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Re: Hey everyone, welcome my friend Joan to the BB

Re : Hey everyone, welcome my friend Joan to the BB --- Delaine Inman
Posted by Christel-California , Nov 03,2001,10:12 Top of Thread Archive
Hi Joan, welcome to the Bulletin Board. Like you, I can't drive anymore, though it's only been a year and a half for me. However, last Sunday I decided to drive to our little country store by myself. It's only a couple of miles. It was early in the morning and no traffice to speak of. My daughter happened to call as I was out and my husband told her that I'd gone to the store.
She had a fit that my husband "allowed me to drive" and apparently got on the phone to tell her sister immediately, who also wasn't pleased, but didn't say anything to me about it.
I hadn't asked my husband's permission and I know the girls are just concerned and although I was very careful and safe, I did realize again that I really shouldn't be driving.
Boy, do I miss it!!!

Christel in Ca.




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Re: Hey everyone, welcome my friend Joan to the BB

Re : Re: Hey everyone, welcome my friend Joan to the BB --- Christel-California
Posted by Sally - in - Idaho , Nov 03,2001,21:42 Top of Thread Archive
Question: Were you able to manage this little drive fairly well without having your eyes close down? Did it make you anervous wreck and exhausted?

The loss of the freedom of driving is one of the most hard to accept limitations of this dratted disease! I do drive very limitedly because I have to sometimes, but it is always a strain and I return home exhausted.

Sally in North Idaho ... had to drive to Spokane today (100 miles r.t.) to get my flu shot ... it was such a bright blue, gorgeous day, people out raking all the beautiful falling leaves in the residential areas. I couldn't believe that I actually ran my a.c. off and on during my trip. The temp was only 60 degrees, but the sun really warmed up the car. Wish I could have enjoyed the driving, rather than counting the miles until I'd be safely home again.




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Re: Hey everyone, welcome my friend Joan to the BB

Re : Re: Hey everyone, welcome my friend Joan to the BB --- Sally - in - Idaho
Posted by Christel-California , Nov 05,2001,01:29 Top of Thread Archive
Sally, my eyes did close, but not for any length of time. I wasn't a nervous wreck (no more than is normal for me anyway :-)) because the distance wasn't great and there was no traffic to speak of. It felt kind of nice to drive somewhere all by my lonesome, but I did realize that I definitely should not be driving. Just wanted to see if still knew how to drive. lol

Christel in Ca. where it rained a little today




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Re: Welcome Joan

Re : Belated note for Delaine --- Joan Mayer
Posted by Shirley-Arkansas-USA , Oct 31,2001,23:16 Top of Thread Archive
Hi Joan and a great big welcome to the bulletin board. I meant to say hi to you earlier and I got side-tracked. I do that a lot. Don't ya just love Delaine? She is wonderful and I'm just mad that she lives so far away from me.
I'm glad that you have been reading the bb and also glad that you decided to post. It really is more fun if you join in. Just jump right into the thick of things.

I'm one of those that doesn't drive, either. I've made some very short little trips of a couple of miles just a few times in the last several years when I was having a good day but I can definitely relate to the loss of "my van" which my hubby is now driving. I've always had a car in the past and now I don't. It still makes me sad at times. I went and renewed my drivers license the other day and wondered why I even bothered. I told myself that I needed it for an ID but I really still hope that I will be able to drive again someday. Maybe not as much as before but enough to do some things on my own.

I'm really glad that you posted and sorry that I didn't say hi earlier.

Shirley in Arkansas

--modified by Shirley-Arkansas-USA at Wed, Oct 31, 2001, 23:17:22




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Re: Welcome Joan

Re : Re: Welcome Joan --- Shirley-Arkansas-USA
Posted by kathy , Nov 02,2001,05:00 Top of Thread Archive
my drivers license picture captures this meige thing that has been going on in my lower face for awhile. it is the worst picture of me that has ever been taken and i really hope i don't look like that all the time. it took me awhile to realize that it is related to meige and i find it scary to look at.



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Re: Belated note for Delaine

Re : Belated note for Delaine --- Joan Mayer
Posted by Dee in OR , Nov 01,2001,16:40 Top of Thread Archive
Hi Joan,

Welcome to the BEB BB. Glad you have decided to come out of hiding and start posting. I don't like this either and I don't think I have assepted it yet. I have accepted and do like Delaine, however. She and the others have been life savers for me.

Dee in soggy Oregon




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Re: Belated note for Delaine

Re : Belated note for Delaine --- Joan Mayer
Posted by Sally - in - Idaho , Nov 01,2001,17:58 Top of Thread Archive
Hi Joan ... I think I welcomed you before, but since memory is a fickle thing ... Welcome to the BB again!! I think Delaine is a great lady and just wish I were near enough to go to her support meetings. Hang around here and join in as often as you can.

Sally in North Idaho




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Re: Belated note for Delaine

Re : Belated note for Delaine --- Joan Mayer
Posted by Alan Phair , Nov 01,2001,18:31 Top of Thread Archive
Hi Joan. I am glad that you started posting. If you have been just listening in for awhile, you will know that I am the one that gets picked on every once in awhile. Actually, they have been nice to me lately which I haven't quite figured out. Anyway, there are not too many of us men who post but I find the board very informational and even though I don't always admit it, quite fun.

Like you, I am unable to drive. Oh, ocassionally, I will take a quick trip to the land fill that is not far from our house but thats it. Every time I try, I get to the end of the street and turn around as my eyes cannot concentrate on the road, they just want to shut. I accept what I have although I never give up trying alternative things. I believe that there are many less fortunate than I and I try and spend my time helping those who need help more than I do.

Keep your chin up and keep posting. We like to hear from a wide range of people. Delaine can be a great help to you. She and I are very similar in our progression of this disorder and she has some good insights into things. Good Luck and God Bless....Alan




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Re: Belated note for Delaine

Re : Belated note for Delaine --- Joan Mayer
Posted by Shanasy in IL , Nov 01,2001,21:52 Top of Thread Archive
I too am deeply grateful for all your efforts in researching the "worthless" botox and your letter writing! I have informed my dr. about this (she wasn't aware) and I really hope EVERYONE notifies their dr.! Your information has been sooo helpful. Thank you for all the time you put into this issue. I am faxing some of your posts to my dr.

Gratefully yours!
Shanasy




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Re: Belated note for Delaine

Re : Re: Belated note for Delaine --- Shanasy in IL
Posted by Delaine Inman , Nov 02,2001,14:51 Top of Thread Archive
Todays communication with my Botox rep indicates he had no idea that there had been a problem with any lot number or at this office. He was suppose to speak at Jan. meeting switched with another doctor without telling me, the doctor told me and then later called to say she had a conflict and wanted Oct. instead. So I've asked the Botox rep to please take the Jan. date back and I'm waiting for his reply.



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Re: Worthless Botox/Lot #

Re : Re: Belated note for Delaine --- Delaine Inman
Posted by Shanasy in IL , Nov 02,2001,18:53 Top of Thread Archive
Do you think it might be helpful for all of us to find out our botox lot number and report how well it worked? My dr. told me my lot number. What better place to discover good and bad lot numbers than here? The first place to start is with the patients and the more info we give to our drs the better they can be at reporting it to Allergan.Why don't we ALL call our drs and find out the lot numbers for our last few (or all) botox injections and then report them here with their effectiveness. I can't think of anything that would work better than that! Anybody? We could start a post regarding lot numbers and keep it going somehow.(I can even make notes on paper in case it gets lost in the many pages here.) We could put in the subject line "Lot # - Good or Bad" (keep it simple since many people struggle to read the BB. The date of injection might be important too. What's everybody think of this idea?

Shanasy




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Re: Worthless Botox/Lot #

Re : Re: Worthless Botox/Lot # --- Shanasy in IL
Posted by Delaine Inman , Nov 02,2001,19:02 Top of Thread Archive
That is a WONDERFUL idea. Thanks for being so smart. I'll be out of town from Sat. until next Fri. Going to TX to visit my son!!!! I'll wave to Shirley from Little Rock. We are staying in a Holiday Inn off I40 at Forrest City Sunday and Wed. night because it is half way.



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Re: Worthless Botox/Lot #/shanasy

Re : Re: Worthless Botox/Lot # --- Shanasy in IL
Posted by kathy , Nov 03,2001,04:18 Top of Thread Archive
i think it's a good idea. i'm sorry but i've missed out on a lot of this discussion. would this help track bad lots of botox? or what.



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Re: Worthless Botox/Lot

Re : Re: Worthless Botox/Lot #/shanasy --- kathy
Posted by Shanasy in IL , Nov 03,2001,10:05 Top of Thread Archive
Yes I really, really think so, especially because we can track it all Yes I think it is VERY important and since all of us are from all over the country WE could track it. Dr,s don't have the time or interest to do this. It would be interesting to note how many states share the same lot #. I've had botox 4 times and I am going to call my drs office and make a record of the lot # and date given for ALL my botox "torturings". Here's a question (Shirley?): Does anyone know how many vials there are for each lot number? This might be a good question for Allergan reps. I think we as patients need to get aggressive with this. I am also curious to know if vials cost the same to ALL doctors. I think it would be VERY interesting to find out since drs are charging us anywhere from $500($) to $3000 for a botox appointment. If we can track this, we could stir up some awareness of "price gouging" and those who are paying the extra high price for botox will have recorded info to fight with. To get anything done on this, it's gotta be up to US!

Shanasy




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Re: Worthless Botox/Lot #

Re : Re: Worthless Botox/Lot # --- Shanasy in IL
Posted by Cynthia , Nov 03,2001,16:34 Top of Thread Archive
Excellent idea! Nothing to lose -- let's do it.
Cynthia



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Re: Belated note for Delaine

Re : Re: Belated note for Delaine --- Shanasy in IL
Posted by Ann Doyle , Nov 03,2001,11:01 Top of Thread Archive
What is this about WORTHLESS BOTOX. My last shot had o effect.. I know that Artane said if it didn't work withing 2 weeks, they would repeat it. I called my Dr. and he said it was too dangerous. Can anyone enlighten me? I find it difficult right now to get around the bb. Please help. What is the maximum ammount of klonopin you can take.? Ann Doyle mahli@mindspring.com



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Re: Belated note for Delaine

Re : Re: Belated note for Delaine --- Ann Doyle
Posted by Delaine Inman , Nov 09,2001,22:40 Top of Thread Archive
I've been out of town and just read your post. Read the post from Oct. 22 about 3 doctors who keep careful records of Botox lot numbers, patient names and dates and call them in 2 weeks to see how the Botox works. If there is a pattern of patients who don't get any results from certain lot numbers, Allergan has been giving them free Botox and the patients are called to come back in for repeat injections at no cost. Now the Allergan Rep. states he knew nothing about this from this practice or any other problems like this in the area he covers (1 1/2 states). I really got him on the offensive and the BEBRF said the same thing he did, that Botulism toxin was given to Allergan in 1989(?) and the Batch lasted until 1997, so Allergan didn't really make any Botulism toxin until then. But this doctor said they noticed problems and the lab closed for a period in 1998 to try and improve quality. I don't know how many lot numbers come from one batch or how many doses in a lot number. I've been out of town and busy with other personal things and haven't had time to follow up any more. The Allergan Rep was to speak to my group in Jan. then gave his slot to the doctor I'm seeing now. Last week she asked to do Oct. instead and the Rep. is coming in Jan. I've posted some of our emails back and forth. Hope that answers your question. I am going to follow up on what lot numbers my Botox has been from those who actually keep up with it ....I have no idea that they do or if I can get it since I've received Botox from 4 different doctors since I've been diagnosed.



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