Remission


Posted by Mindy , Apr 25,2002,18:44   Archive
Dear Friends,
As most of you know I have been in remission for the last 7 1/2 months. (no meds and no symptoms) No botox for the last 3 years.
I went to see my Movement Disorder Specialist yesterday and she gave me the most wonderful news.
She said I am in complete remission and she doesn't feel it will ever come back because this was not a spontaneous remission.
Never give up hope.
God Bless,
Mindy



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Re: Remission

Re : Remission --- Mindy
Posted by Christel-California , Apr 25,2002,18:51 Top of Thread Archive
Mindy, how wonderful, I'm so happy for you.

Christel in Ca.




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Re: Remission

Re : Remission --- Mindy
Posted by Pat Soulia , Apr 25,2002,18:59 Top of Thread Archive
Hi Mindy: Congratulations. I am so happy for you that you are in complete remission. This is wonderful news. I know your worked hard at getting this condition under control. My best wishes for a happy, healthy and blessed future.
Pat Soulia in Stroudsburg, PA



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Re: Remission

Re : Remission --- Mindy
Posted by Shirley-Arkansas-USA , Apr 25,2002,20:02 Top of Thread Archive
I'm really, really glad for you, Mindy. Can we still be friends? :-)
You've been through some really rough times and you have stuck it out and followed your own path to get where you are today. You are living proof that it can happen.
Now, you mustn't forget us. I know that you don't want to think about BEB but you still must stay in touch.
You are the second person that I know that has gone into complete remission-Susan Hasselle being the other.
Love ya Mindy and I'm smiling at you.

Surely Shirley who owes a lot to Mindy




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Re: Remission

Re : Remission --- Mindy
Posted by Sally - in - Idaho , Apr 25,2002,22:50 Top of Thread Archive
Mindy, you have brought much beauty and peace into my life through your e-mails and "forwards." I hope you won't disappear now. I am so happy for you and wish you the very best health. Enjoy every minute of having those eyes stay open. You and Susan give us reason to hope.

Hugs,
Sally in North Idaho




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Re: Remission

Re : Remission --- Mindy
Posted by Evelyn , Apr 25,2002,22:57 Top of Thread Archive
That is really wonderful news, Mindy.
Evelyn



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Re: Remission

Re : Remission --- Mindy
Posted by June in Toronto (June Floyd,June in Toronto), Apr 26,2002,05:36 Top of Thread Archive
Wonderful news, Mindy - enjoy your new found freedom.

Would it be possible for you to list some of the things that you did to bring this about over the long term? I know a lot of the `new posters' (as well as the oldies) would like to know. Thanks

June in Toronto




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Re: Remission

Re : Remission --- Mindy
Posted by Cynthia , Apr 26,2002,09:22 Top of Thread Archive
That is GREAT news! I do hope your entire story will be in Patient Stories Volume ... III
Cynthia in IL



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Re: Remission

Re : Remission --- Mindy
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 26,2002,09:40 Top of Thread Archive
Again this is great! yes, please don't forget us.



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Re: Remission

Re : Remission --- Mindy
Posted by Joanne Matuzas , Apr 26,2002,11:16 Top of Thread Archive
Mindy, this is such exciting news!! Thank you for sharing and all your positive influence on this BB. I know you have also been working on
the inside or spiritual/emotional part of you and I believe that transformation is part of your physical/neurological healing. You
are truly an inspiration and hope for all of us. I share your joy. Take care. Joanne M. San Diego, CA



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Re: Remission

Re : Remission --- Mindy
Posted by Dee Shaw , Apr 26,2002,13:16 Top of Thread Archive
Congratulations Mindy,
I didn't even know remission was possible. How wonderful to have a ray of light and hope come into your life.
Dee, Who has the Meige Sundrome.



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Re : Re: Remission --- Dee Shaw
Posted by Joanne Matuzas , Apr 26,2002,17:50 Top of Thread Archive
Dee, statistics estimate that 10-11% of us go into remission--isn't it
exciting to know someone who has!! Joanne M. San Diego, CA



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Re : Re: Remission --- Joanne Matuzas
Posted by Pippa , Apr 26,2002,18:34 Top of Thread Archive
It sure is!! Thank you for giving us this hope too. It is better to read from someone who has remission than just in medical reports. I am so very very glad for you. You must feel absolutely WONDERFUL!!!!! Roll on the day when we can write in with this great news too. Positive thinking...
Pippa



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Re: My Road to Remission

Re : Remission --- Mindy
Posted by Mindy , Apr 27,2002,10:02 Top of Thread Archive
Thank you all for your well wishes and sharing in my happiness.
My dystonia started 9 yrs. ago. I started with BEB, then Cervical dystonia and Meige.
I was getting Botox for my eyes and sometimes for my jaws, and once for
my neck.
I tried many of the usually prescribed meds. and alternative suppliments, biofeedback and my chiro tried an accupunture gun.
I never had surgery.
I started going to a chiropractor for my neck.
She gave me my first glimmer of hope teaching me about positive thinking, the mind/body/spirit connection and stress management.
Which is not eliminating stress from your life, it is changing your perspective and the way you react to stress.
I had to quit my job working in a Nursery School, and quit driving.
I put what ever energy I had into my healing.
I learned deep breathing and meditation and visualization.
This was my time to rest my eyes and rejuvinate my brain, and visualize my healing.
I would do things that I could focus on that kept my eyes open.
My idea was to re-train my brain, ex. working in the garden, crotcheting, puzzles, video games, vacuuming.
I made a graditude journal. I kept a daily chart of my meds, my symptoms, my moods, and the circumstances of the day.
I stay away from any caffine, and have chocolate & refined sugar as a treat.
As much as I trust and respect my doctor, I put all my faith in God,
and learned what it really means to trust and depend on Him, moment by moment, day by day.
I read there was a 10% chance of remission in the first 3 - 5 yrs.
I was not listening to anyone or giving up hope, even if it took forever.
Someone asked what the doctor meant by "spontaneous" remission.
According to Webster:
produced without being planted or without human labor : INDIGENOUS
developing without apparent external influence, force, cause, or treatment
not apparently contrived or manipulated : NATURAL
Mine was not spontaneous, I worked at it for 9 years. Well worth it.
Love & God Bless,
Mindy




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Re: My Road to Remission

Re : Re: My Road to Remission --- Mindy
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 27,2002,10:33 Top of Thread Archive
It's very strange, but this book i just finished(Prodigal Summer)had this older man in it who had had ngastmus (sp?) for many years and this women performed some sort of cranial manipulation on him and his neck which rearranged and cured his eye problem. It had to be done several times but it worked. i wonder if this part of the book is a true story. I just thought i would add this bit of info.



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Re: Remission

Re : Remission --- Mindy
Posted by Nancy Pfaff , Apr 28,2002,19:29 Top of Thread Archive
Mindy, I am so happy for you. I keep up the hope also for all of us.
May God Bless you always. Love Nancy



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Re: Remission

Re : Re: Remission --- Nancy Pfaff
Posted by irene sieger , Apr 30,2002,09:49 Top of Thread Archive
Mindy Hi my name is Irene and I'm a BEB and I just join the support group. Gold Bless you for been in remission. How long had you been sick. I was just diagnosed in March of 2002. I saw several doctors and know body knew what was going on except for the dry -eyes. I got my first set of shots real soon and right after that My eyes open up. I was surprised. But now I' doing the hard squeezing with my eyes , opening of the mouth, and alot of anxiety. I have a doctors appointment today to see what she gives me to help me with my condition.
Take care
Irene



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Re: Remission

Re : Re: Remission --- irene sieger
Posted by Mindy , Apr 30,2002,20:27 Top of Thread Archive
Hi Irene,
My BEB started 9 years ago.
Welcome to the group. You will find the most wonderful people here
ready to support you with their knowlege and their hearts.
Best Wishes,
Mindy



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