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Old 05-01-2008, 11:58 AM #1
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Default Chris - Ty#6 - MRI Results

Well, MRI's came back bad!!!

6 New active lesions in brain stem

2 New active lesions is spine

His neuro is very concerned. He did a blood test for antibodies to TY but doesn't think he has any because he has had no reactions.

Oh my gosh, what now - he has over 100 in his brain and too many to count in his spine. What will happen if he just continues to get more???????

Sorry, just very scared and worried.
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Old 05-01-2008, 12:14 PM #2
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Dedra, I am so very sorry about his MRI. Take a deep breath and try to get through this. What exactly did the neuro say about it and did he give a prognosis? Sometimes there can be many lesions and little activity. I know this because Jim has many but only one is active.

I know your scared, I remember thinking the very same things you are. Hold on, we're here for you.
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Old 05-01-2008, 12:23 PM #3
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Dedra, I am sorry that the MRI did not turn out to be more promising. Has CHris felt better since being on tysabri? I know that this has to really hard watching your child go through this. Hugs and prayers!

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Old 05-01-2008, 12:33 PM #4
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(((Dedra))) and (((Chris)))

So disappointed for you that there is not good some news to report at this time. I'm wondering (like Barb), is he responding at all to Ty?

That seems like an incredible amount of lesions for someone who was playing basketball just over a year ago.

Was hoping Ty would get Chris back into the swing of things. He has such an infectious smile, I'm sure the girls all miss him.

Thanks for bringing us up to speed. Please give him a hug for me. You are such a good Mom, Dedra. Please try not to worry too much. Chris needs you to stay healthy for both your sakes!
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Old 05-01-2008, 12:35 PM #5
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Quote:
Originally Posted by SandyC View Post
Dedra, I am so very sorry about his MRI. Take a deep breath and try to get through this. What exactly did the neuro say about it and did he give a prognosis? Sometimes there can be many lesions and little activity. I know this because Jim has many but only one is active.

I know your scared, I remember thinking the very same things you are. Hold on, we're here for you.
Thanks Sandy,

I knew you would understand - he is running blood work for antibodies but is very confused with the new active lesions as TY is suppose to stop those.

For now he put him on a 9 day predisone taper and will will contine to stay on Ty for now.
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Old 05-01-2008, 01:06 PM #6
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Dedra I'm so sorry ya'll got bad news. But, you know, it isn't the number of lesions it's the location of them. I have a lot, too, and some of them are causing me trouble. I hope the steroids help. Is he having problems right now while he's on TY? I'll keep you both in my prayers and hope that things get better for both of you. I know this is stressful - probably more so than if you were sick yourself. As a Mom I know it's never easy to watch your children suffer.
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Old 05-01-2008, 01:16 PM #7
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He really hasn't complained at all - only his fingers tingling nothing else.
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Old 05-01-2008, 02:20 PM #8
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He really hasn't complained at all - only his fingers tingling nothing else.
I had the same thing happen to me - got my MRI done and when it came back there were more lesions and a few of the old ones were enhanced. Guess that explains why my right arm and hand have been numb since October of last year. I've about gotten used to it - but still have considerable pain in my hand.

Has he been on any of the other DMD's? I hope this doesn't get him down....from what I've been told it's common in MS. You can have a head full of lesions but only a couple cause trouble.

I hope ya'll are doing OK.....I'm sorry you're having to go through this. But he's so fortunate to have a Mom who cares so much.
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Old 05-01-2008, 08:27 PM #9
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I am so very sorry to hear this, for both of you.

The fact that he is not suffering any side effects and only tingling in his fingers is a good thing, the new lesions aren't.

I know that for some people it takes more time. I haven't heard from anyone who had antibodies and didn't have reactions, so that's in his favor.

I know if it was me, I'd be worrying right now too and waiting with bated breath for the results from the tests. Please let Chris know I am praying for good results, and please let us know how the tests come out.

You're a good mom, Dedra. I wish there was some way to take away this pain and worry for you. I know if my Mom was still here, she would have been out of her mind with worry through this whole process with me, and I can tell it's the same with you.

We're here if you need to vent.
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Old 05-01-2008, 08:50 PM #10
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My prayers are with you. So sorry you are all going through this.
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