visit to primary care, missing my face, supportive people


Posted by S. LaShelle Fisher , May 06,2002,20:12   Archive
I saw my primary care physician today, armed with the printouts from you good people. He was pleased that I was not having eye spasms, and at first he was just going to wait and see how long the Botox lasted before he decided what else to do. He didn't even address the lower face spasms because at least I could see now. But with your information I pushed to be sent to a movement specialist NOW, and he agreed to write for approval to send me to UCLA. THANK YOU ONE AND ALL who gave me courage and information to fight. The helplessness is what causes the depression, so when I can go after a solution I feel so much more hopeful.
I miss my face too. I used to be considered pretty, then as age creeped up my genetics favored me and I was told I had a pretty infectious smile. Since the spasms finally envolved my entire face I have been feeling hideous, making faces at everyone, plus it is physically exhausting to have my face work so hard all the time, and it ached. I am grateful that I can at least have relaxation when I sleep, but sometimes it is hard to get my face quiet enough to go to sleep. I have chastised myself for my "vanity". At least I am an older lady and have not had to live my life this way. I told my pretty sixteen year old that you never know what can happen to you and that external beauty doesn't last. (Good thing for a young person to know) She, and my husband, and my daughter and family (five adorable grandkids)who live in Utah, say it is not so bad. I am grateful for their support. It really means a lot and keeps me from going into the depths of despair. People at church (when I felt the courage and energy to attend, now I attend with the Botox results) are supportive also. They just ask how I am doing and say I look better (whether I do or not. This Sunday I actually enjoyed myself)) Most people are really wonderful
Since the Botox shots I am grateful that my eyes are open and I have a respite for awhile, but I received some injections that changed my smile. I do not look like me. I will accept that to have my eyes open It will be several weeks before I get to UCLA but I will let you know the lastest. We all need information.
One thing more.
Has anyone had the experience that the Botox did not last three months? I think I already am losing some effect in a spot or two
Love,
LaShelle
In Lancaster, California



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Re: Lovely smile

Re : visit to primary care, missing my face, supportive people --- S. LaShelle Fisher
Posted by Sally - in - Idaho , May 06,2002,21:52 Top of Thread Archive
Hi LaShelle,

I loved your smile, and thought it rather infectious and mischievous even. Thank you for sharing your family with us in the web site. It sounds as thught you have a very supportive family who sees your inner beauty coming through even on days when the scrunching doesn't allow you to be as "pretty" as you'd like.

The facial maneuvers we go through trying to get our eyes to behave does cause a definite ache. I know that after I have driven (and I only do short little jaunts) my whole face aches from the pressure of keeping my eyes open.

I'm glad you had the strength to push for the medical help you wnat. It is true, that making a decision and following through does relieve some of the stress and depression. You now have a plan!

Keep on keeping on! You're doing just fine.

Sally in North Idaho where snow flakes fell again today, didn't stay but floated around through the air! Poor Mother Nautre definitly needs some psychiatric help as she sure is confused these days!




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Re: Lovely smile/P.S.

Re : Re: Lovely smile --- Sally - in - Idaho
Posted by Sally - in - Idaho , May 06,2002,21:54 Top of Thread Archive
I have Botox injections every eight weeks, and am ready for them then. It seems to have worn off at about six weeks. The dosage I receive is 90-100 units total each time.

Sally




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Re: Lovely smile

Re : Re: Lovely smile --- Sally - in - Idaho
Posted by S. LaShelle Fisher , May 07,2002,22:22 Top of Thread Archive
Thank you for the compliment on my smile, and the support.
I am realy afraid I will lose my face for the rest of my life. I didn't know until I read "I miss my face" that that is a common anquish in this condition, and not just vanity.
I want to put one of my favorite pictures of me , smiling widely, holding two grandchildren, on the picture part of this site.
Love and luck to all.
LaShelle in Lancaster, California.

--modified by S. LaShelle Fisher at Tue, May 07, 2002, 22:23:15




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Re: Lovely smile

Re : Re: Lovely smile --- S. LaShelle Fisher
Posted by Shirley-Arkansas-USA , May 08,2002,17:26 Top of Thread Archive
Hi LaShelle, your lovely photo of you and your two granddaughters is now in the "BB Family Album". It brought a smile to my face. Go check it out.

Shirley in Arkansas




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Re: Lovely smile

Re : Re: Lovely smile --- Shirley-Arkansas-USA
Posted by colleen , May 08,2002,19:09 Top of Thread Archive
Shirley thanks for the wonderful pictures.I just finishing looking at them& now i really feel like i belong to a great family.
Will be watching for more pictures.
Colleen in IL Where the rain is never ending.
More severe storms tonight.



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Re:frequency of Botox/ La Shelle

Re : visit to primary care, missing my face, supportive people --- S. LaShelle Fisher
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), May 07,2002,06:25 Top of Thread Archive
i usually can go only 6 weeks between injections with a total of75 units. My injections have again (January of this year being the first time in quite awhile) lasted another 2 weeks. I don't know why, but I'll take it. I have them this morning.



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Re: Re:frequency of Botox/ La Shelle

Re : Re:frequency of Botox/ La Shelle --- Kathy in Atlanta
Posted by debbie campbell , May 07,2002,17:27 Top of Thread Archive
Hello LaShelle,

For me, I was diagnosed in Jan, and receive my first injections a week or so later. My eyes opened in 4 days but it only lasted for a week and then struggled the second week trying so hard to keep them opened then had not choice and they just closed again. My neurologist will only give the injections every 3-4 months so I had to wait until the end of March! It was the longest 3 months of my life and trying to perform at work each day. My second set was given Mar28th, again my eyes opened in 4 days and as of today, they are still open and I am driving! I am hoping and praying they stay this way until the end of June which will be the 3 month mark and my 3rd set can be give but more so because I would love need them to be open to see my daughter Nicole graduate from grade 8 on June 25th but I am thinking I may have to enjoy it while watching it on the camcorder a few days later. These are the things that frustrate me the most.
take care, and keep smiling
Debbie




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Botox/ length of effectiveness

Re : visit to primary care, missing my face, supportive people --- S. LaShelle Fisher
Posted by Ann Doyle , May 09,2002,05:47 Top of Thread Archive
My Botox has never lasted 3 months. I feel like I've lost a lot of it by 4-5 weeks. I can still work but not drive after that time period. After 8 weeks, I can no longer work or open my eyes most of the time.
Most doctors don't like to give Botox more often because they think you will build up an immunity to it. Up until this month, 100 units was the max given for beb/Meige but now it is 150. I have an appointment in 2 weeks. I hope he will give me more or closer together. This last 2 months have been the pits. My condition is still getting worse every month. I now have it in my jaw and throat but my eyes bother me the most.
It seems to wear off on a lot of people. Some are lucky and it lasts or they don't even need Botox. Others are worse off and it doesn't work at all. Ann Doyle



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Re: Botox/ length of effectiveness

Re : Botox/ length of effectiveness --- Ann Doyle
Posted by Kelly Saffell , May 09,2002,08:34 Top of Thread Archive
Your story sounds just like mine. My doctor injects me every 8 weeks luckily. At least I guess I'm lucky. I do worry about building up antibodies in the future but for now I have to be able to care for the girls and I can't do it if I wait 3 months. Mine spread to jaw and throat as well. Last summer was really bad. I choked alot when I would eat and ended up losing 3 lbs. (I only weighed 98 to begin with) But after a few months the throat spasm and the spasm at the back of my tongue eased up and now I can eat without choking but have to be very careful when I drink. The botox in my jaw muscles seems to help as well. I went for injections on Friday and he gave me a little more than the 100 units. We are going to gradually increase and see if I can't get a little better relief.
Kelly



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