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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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Loobie
 Post subject: I started a blog
PostPosted: Mon Jul 06, 2009 9:55 am 
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Well I'm finally a blogger! I started it since I have so many wonderful friends and family who just don't know how to do internet forums and they all want to stay current with how this works out. And since I'm windier than a bag of buttholes, it will give me a place to release some of my writing angst :lol: . The address is here: http://myhopefuljourneyintoactualmsreco ... gspot.com/. It's totally not about informing people about the science behind CCSVI and all about how it affects the person. I hope my fingers get sore posting good news.

I know that address is a little long, but I'm a new blogger as of this morning and I just clicked the OK box when they were suggesting website names. Believe it or not, there are all kinds of blogs using "Loobie" in the domain name. I'll shorten it up at some point, but I'm going to track here and on there. We are now down to less than a week. I'm freaking out. It's so damn awesome to keep reading Alex and everyone's improvements. I can't let my hopes get too high, but Lord this is exciting!!!!!!

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peekaboo
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PostPosted: Mon Jul 06, 2009 10:15 am 
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Congrats Loobie Doobie - I went and signed up on your blog...I am new to this as well, so I will need sometome to figure it all out..ie: communicating on your blog.

I was going bonkers the week before I left for stanford...Know how you feel :)
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cheerleader
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PostPosted: Mon Jul 06, 2009 11:39 am 
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Nice work, Lew! I think it's great to write from your perspective, and let folks know how this impacts a real live MS patient. You're not responsible to explain the science...just share your insights and be honest about the journey...this is all moving so fast, it's good to take a step back and document what's going on in your life. Jeff's warming up the MRI/MRV machine for you right now :)
xo,
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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mrhodes40
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PostPosted: Mon Jul 06, 2009 12:52 pm 
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Great blog Lew!! It'll be a good thing for people. And you are so right TIMS is the place to be. I learned of abx here and was really glad to do it too. And now CCSVI and freedom to post about it and talk about it all we want. It is great. And hey you get to share your blog too! it is all good for everyone involved :D

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics


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catfreak
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PostPosted: Mon Jul 06, 2009 8:12 pm 
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Lew,

Great blog!! Took me a hour to figure out how to post a reply. DUH!! :roll: :roll:

Keep it coming!

Cat

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9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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CureOrBust
 Post subject: Re: I started a blog
PostPosted: Tue Jul 07, 2009 2:01 am 
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Loobie wrote:
The address is here: http://myhopefuljourneyintoactualmsreco ... gspot.com/. .... I know that address is a little long, but I'm a new blogger as of this morning and I just clicked the OK box when they were suggesting website names.
just to be sure, you understand that even though the website name is long, it does not count as your first post.
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Loobie
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PostPosted: Tue Jul 07, 2009 5:35 am 
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:lol: :lol:

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Loobie
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PostPosted: Fri Jul 24, 2009 5:42 am 
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Bumped for a friend.

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CureIous
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PostPosted: Fri Jul 24, 2009 8:25 pm 
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:)

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap


Last edited by CureIous on Sat Oct 03, 2009 3:00 pm, edited 1 time in total.

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Loobie
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PostPosted: Sat Jul 25, 2009 4:34 am 
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Thanks Mark!

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mrhodes40
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PostPosted: Sat Jul 25, 2009 7:55 am 
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add it to your signature line so we can check in from time to time :D

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics


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Loobie
 Post subject:
PostPosted: Sat Jul 25, 2009 9:21 am 
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Good idea! Plus you can post comments on there now. I went through the settings and just had to unclick a box.

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Loobie
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PostPosted: Tue Jul 28, 2009 7:51 am 
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Update today with some cautiously optomistic good stuff and also some stuff about how moronic I can be at times.

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cheerleader
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PostPosted: Tue Jul 28, 2009 8:05 am 
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Loobie wrote:
Update today with some cautiously optomistic good stuff and also some stuff about how moronic I can be at times.


Great post, Lew! Really excited to read about the improvements in vision, balance, bladder and heat tolerance! Jeff did the over-doing-it thing the first few weeks, too. I think it's natural...you want to see if this is "for real". Jeff and Marie's tip for that Spock-pinch, level 10 shoulder pain was a wet towel inside a zip lock gallon baggie, microwaved for a minute. Place that on the shoulder, and breathe deeply. Jeff didn't want to do muscle relaxants, since he feared feeling tired...but in retrospect, Sharon's tip might be the thing to do for you. Hang in there...the pain lasts a few weeks, but the improvements will stay, and hopefully keep getting better-

a very happy,
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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chrishasms
 Post subject:
PostPosted: Tue Jul 28, 2009 8:50 am 
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123


Last edited by chrishasms on Sat Dec 05, 2009 1:56 pm, edited 1 time in total.

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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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