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02-21-2010, 12:18 PM | #31 | |||
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In Remembrance
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Wow, Nat, I'M excited.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | Natalie8 (02-21-2010) |
02-21-2010, 01:38 PM | #32 | |||
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Member
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Thanks for the well wishes everyone. And yes my insurance is covering it!!
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On Tysabri and love it. . |
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02-22-2010, 12:14 AM | #33 | |||
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Senior Member
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Natalie, great news. I'm hoping and praying for a wonderful outcome with the surgery on Friday for you.
Clear those blockages and come back strong, with great improvements. We know you will need some down time to adjust and rest but please when you feel up to it, let us know how you are feeling. We will hold our breath until we hear from you. It is so exciting. I wish it was me getting this done. I would do it, blockages aren't normal in anyone. If the insurance co pays for it, why not? A clear blood-flow from the brain is the first step to better health. We cheer you on Natalie.
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LADY May happiness be at your door. May it knock early, stay late, and leave the gift of good health behind. "Life is what it is". We can only focus on controlling those things we can control, we must let go of the things we can't. |
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02-23-2010, 12:15 PM | #34 | |||
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Magnate
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Natalie, I wish you the best. I've been reading about this procedure, and it sounds like something the MS world needs.
I'm receiving my 6th Tysabri infusion this week, and so far I'm having wonderful results with it. My plan is to give it a full year, then put my name on the list for the Liberation treatment.
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Mair . |
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02-24-2010, 01:23 PM | #35 | |||
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Junior Member
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So good of you to keep us updated!Good luck Fri! I'm thinking of you!As we all areKeeping you in my prayers....Jim
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"Thanks for this!" says: | Natalie8 (02-27-2010) |
02-26-2010, 07:25 AM | #36 | |||
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Member
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Today is the big day! My prayers are with you, Natalie.
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Life really is a bowl full of cherries once you learn how to spit out the pits. |
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02-26-2010, 08:52 AM | #37 | |||
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Elder
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I am so excited for her! go get um girl!
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RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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"Thanks for this!" says: | Natalie8 (02-27-2010) |
02-26-2010, 11:53 AM | #38 | |||
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In Remembrance
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Nat, please check in as soon as you're able.
You are, especially, in my prayers today.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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02-27-2010, 12:18 AM | #39 | |||
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Hi all!! I am home and feeling very sleepy from all the drugs! It was a very strange and ultimately disappointing day. First, the doc and nurses were wonderful--kind, funny, professional. I've never had a more pleasant stay in a hospital! But Dr. X went in and discovered both my lower jugular veins are now completely open. The scan in Dec. showed them almost 90% blocked. There was a large collateral vein system that compensated which was definite evidence of obstruction. Both Dr. X, the Stanford doc and one other radiologist said no doubt it was there. But what happened to the blockages??? He showed me video of contrast dye flowing through the veins today--if anything the previously blocked parts were now the widest part of the vein. There was mild stenosis in the upper left jugular but so high Dr. X said it could only be fixed by stent (the Stanford films showed this too). And of course the plan today was the lower jugs. Dr. X was completely shocked, had no explanation, but also got excited because he saw this as "new" evidence --another possible piece of the bigger CCSVI puzzle. Do stenoses come and go? If they do, they might not always show up on a scan. Are they more an inflammatory reaction since they might not be permanent? Or am I complete freak of nature and just an anomaly? Dr. X has talked with the MS clinic and they are considering starting a trial of some sort. My case throws a wrench in the scheme of what we think we know about CCSVI.
So it was quite disappointing for me especially. I feel like my insurance plan was taken away. I was looking forward to charting any changes. Now my MS is very mild... No progression so I should be happy with that. But I fear the future sometimes and this was my safety blanket. Sorry I don't have anything optimistic or certain to report. Dr. X wants to follow this...maybe ultrasound me every 2 months to see if it comes back or comes and goes. He also thinks this might be a useful clinical trial. Do see him in 2 months. Meanwhile he will confer with the neurologists. PS: The procedure was not scary at all. I have no pain left where the incision was. During the procedure--just a little headache.
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On Tysabri and love it. . Last edited by Natalie8; 02-27-2010 at 12:48 AM. |
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02-27-2010, 02:54 AM | #40 | |||
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Senior Member
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Ya-know!!! Just when something looks like a possible benefit for us with MS, wham! the door slams shut! I'm sorry for your disappointment, Natalie, but thank you for going first. I'm glad you didn't have pain!! Maybe something positive will come of it eventually. But that's really strange.......where did the blockage go??
What's next????
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_____________________________________________ .....Judy SPMS -- FIBROMYALGIA -- Ouch! and Ouch! . |
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