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post #1 of 15 (permalink) Old 09-10-2007, 06:59 AM Thread Starter
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You never know

What life is gonna throw at you next. A few of you know I didn't go to the MSF as planned. I will be able to reschedule and the school is holding my registration. If you have read my other posts then you know about the health issues some of my kids are going thru. Taylor had her mri last thursday. I expected it to be "normal" Well fri morn the Dr called and said she had an area of demyelination on her left frontal lobe. Demyelination occurs with the Disease known as Multiple Sclerosis.

"Demyelination is the term used for a loss of myelin, a substance in the white matter that insulates nerve endings. Myelin helps the nerves receive and interpret messages from the brain at maximum speed. When nerve endings lose this substance they can not function properly, leading to patches of scarring, or ‘sclerosis’, occurring where nerve endings have lost myelin. It is these areas of scarring that give multiple sclerosis its name."


So let just say I haven't been in the right frame of mind to do much of anything. Waiting on a call from the Dr to see when Yale will see her. I may see if I can get her up to Boston Childrens sooner. The biggest thing I can stress with what we have been thru so far is DO NOT let the doctor brush you off. Don't let them make you feel like you don't know your child. Now we have to wait and I hate waiting. HATE IT. So anyhow theres my update. MS is really rare in a child of 9 but it happens. I know this means more tests. SIGH. Keep us in your thoughts.

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post #2 of 15 (permalink) Old 09-10-2007, 07:05 AM
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My prayers continue to go out to you. Sorry to hear you didn't get the news you were expecting back. On a kinda good note, they have made great strides with MS, and if diagnosed early, can often times be controlled. I know that probably offers zero help to you right now, but just saying.

Try to stay positive, and you right, don't be afraid to push the doctors.

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post #3 of 15 (permalink) Old 09-10-2007, 07:18 AM
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On a kinda good note, they have made great strides with MS, and if diagnosed early, can often times be controlled.


As I've mentioned in other posts, my step father was diagnosed with MS about 9 years ago, and has, for the most part (he has actually begun periodic chemo treatments this year), been able to keep it under control with medication, and continues to lead a very normal, healthy life, as well as continue his work as an attorney (he actually began & graduated from law school AFTER he was diagnosed).

I will keep you all in my prayers, and if there's anything we can do to help, please let me know...
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post #4 of 15 (permalink) Old 09-10-2007, 07:25 AM Thread Starter
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Thanks both of you. My experience with MS isn't as good as your stepfathers. My moms best friend has MS and I watched her go from walking to a wheelchair over about 5 years and it seems nothing helps her. The sad thing is you never know how it will affect someone. I have found a few Pediatric MS centers withing 3-4 hours away. So I think I may take her to one.

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post #5 of 15 (permalink) Old 09-10-2007, 08:09 AM
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There's this little stint I do called "candle magic" which to me is just as effective as prayer. I truly hope everything works out for the better. MS is one of those mysteries most never hear of...it's like Fibromyalgia. Ppl eithier have heard of it or haven't. Do what your instincts are, and I know just from talking to you here, as a Mother...you won't let anyone feed you ANY bs! Stay strong hun and know you have the entire support of TWF behind you!!

"I never said I wanted to BE a Sailor, I just want one, that's all"!!!
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post #6 of 15 (permalink) Old 09-10-2007, 08:14 AM
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We are here for you! Our prayers and sympathies are yours for the asking. As a parent I feel for what you are going through. The worries are sometimes so much worse than the reality though so focus on what you have right now, today, and let tommorrow bring what it will.

"Industria, Virtus, et Fortitudo"
(means build it right, ride it hard, and never let up!)

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post #7 of 15 (permalink) Old 09-10-2007, 08:37 AM
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keep your head up, stay strong for the kids.

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".. speed, you can't touch it, but you damn sure can feel it! "
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post #8 of 15 (permalink) Old 09-10-2007, 09:48 AM
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Prayers and luvs from my family to yours.



It is not about how hard you can hit! Its about how hard you can get hit and keep moving forward!

Don't judge me based on your ignorance.

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post #9 of 15 (permalink) Old 09-10-2007, 10:44 AM
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Always in my prayers baby
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post #10 of 15 (permalink) Old 09-10-2007, 10:52 AM
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Prayers for you and your family. Your a great MOM.
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post #11 of 15 (permalink) Old 09-10-2007, 05:31 PM
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Thoughts and Prayers, twinks.

Also, let me know if there is anything I can do for you, including a couch to crash on, when you bring her up to Boston Children's if that happens.
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post #12 of 15 (permalink) Old 09-11-2007, 07:20 AM Thread Starter
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Thoughts and Prayers, twinks.

Also, let me know if there is anything I can do for you, including a couch to crash on, when you bring her up to Boston Children's if that happens.
Thanks We have an appt Dec 10th at boston childrens!

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post #13 of 15 (permalink) Old 09-11-2007, 07:51 AM
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Oh, Angel! My heart goes out to you. I hope things go well and your daughter feels better soon.
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post #14 of 15 (permalink) Old 09-11-2007, 08:16 AM
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it must be awful knowing your child is ill and there is nothing you can do to help her. that is one of the greatest burdens of motherhood...feeling helpless. you are in my thoughts. hopefully things turn out well for you. please keep us informed.

when you turn your bike on, does it return the favor?



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post #15 of 15 (permalink) Old 09-11-2007, 12:56 PM
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You and your family are in my prayers, God Bless
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