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Sign Guestbook   Back to My life with Syringomyelia aka: SM

NameCarol
Date2009-11-18
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MessageGod Bless You,
Prayers and Hug's

Our Son Kenny lives with Chiari and Syringomyelia.

It is devestating for a Young Man.

Yes, He lives wit much pain and is very limited.

Truely Understand
He is in His Early Thirties.

We care for Him.

Prayer's
and Love
Carol


NameJessica
Date2009-10-15
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MessageI loved reading your blog, my daughter is now 1 and was diagnosed with Idiopathic Syringomyelia. Her syrnix is at t9 to the base of her spine and is biggest at t5. It was 3mm but in less then 3 months it went to 8mm. ANy information you have or any support you know of please contact me. I am at witts end


NameJessica
Date2009-09-29
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MessageHello Janice Im sorry you have to deal with the pain and suffering of having SM. My daughter was diagnosed at 8 months of age with it. She has no chiari and no other known reason for having it. My daughter is now 11 months old and just had her first surgery. Im scared and sad for her future. I will say a prayer for you


NameWendi Kratzer
Date2009-09-29
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Be sure to sign my guestbook on the way out!!Hang in there sweetheart!!
MessageJanice:

Roz PM'd me and said to check out your blog. I looked at it recently and knew you had not updated in a few months. She said you need our support and boy she hit the nail on the head.

Please, oh, please, don't give up the fight! You are stronger then you give yourself credit for. If I were near you, I would come get you and take you out. You know I would. All your ASAP friends love you and need you. Please hang in there. Your blog made me cry. I feel so bad for you!

I hope just getting things off your chest or venting as we say was what you needed. I am here for you, just pm me.

Wendi


NameGina Bianchi
Date2009-09-01
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MessageJust visiting from the ASAP boards. I love that your blog sheds light on the disorder and makes me feel like I am not alone in this. Keep blogging, you are an inspiration.


NameCyn de
Date2009-06-12
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Be sure to sign my guestbook on the way out!!Cynzilla
MessageJanice......Just wanna say I am thinking about you...I "lurked" on the asap board and read your post. PLEASE PLEASE PLEASE emailme @
[email protected]
My thoughts and prayers are with you always and thanks for being a big part of my support thorugh the years. smilie


NameMary MacPherson
Date2008-11-16
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MessageGood Morning Janice:
Since joining asap you have been a great help, positive influence, and make it less scary for us newbies and I for one wanted to thank you. You're such a dearheart, answering so much for so many, and we appreciate you.
I only have SM too (don't ya love the "only" part???)
Have the most comfy day you can and enjoy knowing what a huge help you have been to many others. Thank you
Marymac


NameBeatriz Cadena
Date2008-10-23
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Be sure to sign my guestbook on the way out!!Beatriz
MessageYou know you are my Sunshine, my Admiration and Motivation. You are an incredible woman that will make history all over the world as this horrible desease keeps on growing in the human beings and cientists keep on looking for a cure. Every time I have the opportunity to mention your case, I do it with all the honors a HERO deserves. I am spreading the word for SM!!!

God Bless You
Love,

Beatriz


NameLumen Gonsalves
Date2008-10-16
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MessageHi. Jancie,
This is mrs. Lumen Gonsalves,suffering from sm,with arnold charia since 1995. I was very happy to reading your profile. It is only the positive thinking, power of prayer and support of family and friends, most of all the blessings from my patients. F am a nurse by profession.
God bless you,
Keep Smilling
LUMEN


NameTara
Date2008-09-18
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MessageThank you for responding to my mri report on asap. that was thebest news i have hadrecently! Now if you have any advice this is what i have been going through. costant headache 24/7 for along time years. my body feels like i have the flu every day it aches some days worse than others. the pressure on my heaad prevents me from bending over to pick things up.my back hurts very badly along with my neck. i feel as if i have vertigo or something loose in my head sometimes it makes me so nauseated i cant eat or it will come right back up. i have charlie horse cramping in my neck and legs my left shoulderblade has been tingling for about 3 years and i have occasional numbness in the left upper portion of my face newest symptom. I am also finding that heat from the summer hot shower or exercise makes my head pound evenmore. I am a single mom who lays on the couch with ice on my head every night since thats the only thing that helps. i want to get back to living and having fun with my 7 year old if you have ANY help you can offer please let me know. Sorry for the long response here i appreciate your time. Hope your day is good.


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