This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Wed May 22, 2013 1:07 pm

View unanswered posts | View active topics


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

All times are UTC - 8 hours [ DST ]



Post new topic Reply to topic  Page 1 of 8
  [ 119 posts ]  Go to page 1, 2, 3, 4, 5 ... 8  Next
  Print view Previous topic | Next topic 
Author Message
Loobie
 Post subject: I started a blog
PostPosted: Mon Jul 06, 2009 9:55 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 11, 2006 3:00 pm
Posts: 2197
Location: Dayton, Ohio USA
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!!!!!!

_________________
http://myhopefuljourneyintoactualmsreco ... ogspot.com
Top
 Profile  
 
peekaboo
 Post subject:
PostPosted: Mon Jul 06, 2009 10:15 am 
Offline
Family Elder
User avatar

Joined: Sun Feb 08, 2009 4:00 pm
Posts: 627
Location: Arizona
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 :)
Top
 Profile  
 
cheerleader
 Post subject:
PostPosted: Mon Jul 06, 2009 11:39 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4676
Location: southern California
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

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


Top
 Profile  
 
mrhodes40
 Post subject:
PostPosted: Mon Jul 06, 2009 12:52 pm 
Offline
Family Elder
User avatar

Joined: Thu Sep 23, 2004 3:00 pm
Posts: 2066
Location: USA
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

_________________
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


Top
 Profile  
 
catfreak
 Post subject:
PostPosted: Mon Jul 06, 2009 8:12 pm 
Offline
Family Elder
User avatar

Joined: Sun Jun 01, 2008 3:00 pm
Posts: 791
Location: Mississippi
Lew,

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

Keep it coming!

Cat

_________________
Holly - Shine On You Crazy Diamond - Pink Floyd

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.
Top
 Profile  
 
CureOrBust
 Post subject: Re: I started a blog
PostPosted: Tue Jul 07, 2009 2:01 am 
Offline
Family Elder
User avatar

Joined: Wed Jul 27, 2005 3:00 pm
Posts: 2691
Location: Sydney, Australia
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.
Top
 Profile  
 
Loobie
 Post subject:
PostPosted: Tue Jul 07, 2009 5:35 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 11, 2006 3:00 pm
Posts: 2197
Location: Dayton, Ohio USA
:lol: :lol:

_________________
http://myhopefuljourneyintoactualmsreco ... ogspot.com
Top
 Profile  
 
Loobie
 Post subject:
PostPosted: Fri Jul 24, 2009 5:42 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 11, 2006 3:00 pm
Posts: 2197
Location: Dayton, Ohio USA
Bumped for a friend.

_________________
http://myhopefuljourneyintoactualmsreco ... ogspot.com
Top
 Profile  
 
CureIous
 Post subject:
PostPosted: Fri Jul 24, 2009 8:25 pm 
Offline
Family Elder
User avatar

Joined: Tue Jul 14, 2009 3:00 pm
Posts: 1155
Location: Riverside, CA
:)

_________________
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.

Top
 Profile  
 
Loobie
 Post subject:
PostPosted: Sat Jul 25, 2009 4:34 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 11, 2006 3:00 pm
Posts: 2197
Location: Dayton, Ohio USA
Thanks Mark!

_________________
http://myhopefuljourneyintoactualmsreco ... ogspot.com
Top
 Profile  
 
mrhodes40
 Post subject:
PostPosted: Sat Jul 25, 2009 7:55 am 
Offline
Family Elder
User avatar

Joined: Thu Sep 23, 2004 3:00 pm
Posts: 2066
Location: USA
add it to your signature line so we can check in from time to time :D

_________________
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


Top
 Profile  
 
Loobie
 Post subject:
PostPosted: Sat Jul 25, 2009 9:21 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 11, 2006 3:00 pm
Posts: 2197
Location: Dayton, Ohio USA
Good idea! Plus you can post comments on there now. I went through the settings and just had to unclick a box.

_________________
http://myhopefuljourneyintoactualmsreco ... ogspot.com
Top
 Profile  
 
Loobie
 Post subject:
PostPosted: Tue Jul 28, 2009 7:51 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 11, 2006 3:00 pm
Posts: 2197
Location: Dayton, Ohio USA
Update today with some cautiously optomistic good stuff and also some stuff about how moronic I can be at times.

_________________
http://myhopefuljourneyintoactualmsreco ... ogspot.com
Top
 Profile  
 
cheerleader
 Post subject:
PostPosted: Tue Jul 28, 2009 8:05 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4676
Location: southern California
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

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


Top
 Profile  
 
chrishasms
 Post subject:
PostPosted: Tue Jul 28, 2009 8:50 am 
Offline
Family Elder

Joined: Thu Sep 14, 2006 3:00 pm
Posts: 1161
123


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

Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  Page 1 of 8
  [ 119 posts ]  Go to page 1, 2, 3, 4, 5 ... 8  Next

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

All times are UTC - 8 hours [ DST ]

Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. my new Blog / mon nouveau Blog

LOUIS

0

1087

Sun Aug 22, 2010 12:13 pm

LOUIS View the latest post

There are no new unread posts for this topic. How to get started?

newmomma09

1

681

Wed Mar 24, 2010 12:45 am

eric593 View the latest post

There are no new unread posts for this topic. Pacific Interventionalists started doing CCSVI treatments

Denon

14

3654

Fri Jul 30, 2010 10:33 pm

Katie41 View the latest post

There are no new unread posts for this topic. I started a Live Chat Room for CCSVI .Link Inside

LymeNurse

1

831

Tue Apr 26, 2011 9:34 am

MegansMom View the latest post

There are no new unread posts for this topic. Our new Blog

Johnnymac

14

1696

Thu Apr 15, 2010 2:54 pm

Johnnymac View the latest post

 


Who is online

Users browsing this forum: No registered users

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: