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 Thu Jun 20, 2013 12:07 am


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 20 posts ]  Go to page 1, 2  Next
Author Message
PostPosted: Sat Feb 13, 2010 3:02 pm 
Offline
Family Elder
User avatar

Joined: Thu Oct 08, 2009 3:00 pm
Posts: 113
Hi everyone
There was a news report on my treatment and the Buffalo results.

I thought you may be heartened by it.

<shortened url>
:D


Top
 Profile  
 
 Post subject:
PostPosted: Sat Feb 13, 2010 3:06 pm 
Offline
Family Elder
User avatar

Joined: Mon Oct 03, 2005 3:00 pm
Posts: 902
Yes, we saw that, well done! You're a star. :)


Top
 Profile  
 
 Post subject:
PostPosted: Sat Feb 13, 2010 3:12 pm 
Offline
Family Elder
User avatar

Joined: Sun Aug 30, 2009 3:00 pm
Posts: 402
Location: Chandler, AZ
Awesome! You look good too!

Quote:
Dr Doug Brown, Biomedical Research Manager at the MS Society, said: "These results are intriguing but it is important to remember that although people with MS may show evidence of CCSVI in screening studies, there’s no proof as yet that this phenomenon is a cause of MS, nor that treating it would have an effect on MS.


This no proof thing just bugs me. I know what they mean, but I tell you, I hope everyone can stay hopeful despite hearing this so many times.

Stay positive everyone!
Beth

_________________
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.


Top
 Profile  
 
 Post subject:
PostPosted: Sat Feb 13, 2010 4:59 pm 
Offline
Newbie
User avatar

Joined: Fri Feb 12, 2010 4:00 pm
Posts: 6
Hi

Great news!

was just wondering if you suffer from fatigue and have noticed any improvement and also did the treatment go well ie and problems with surgery?


Top
 Profile  
 
 Post subject:
PostPosted: Sat Feb 13, 2010 6:28 pm 
Offline
Family Elder

Joined: Thu Nov 26, 2009 4:00 pm
Posts: 185
Great interview, wonky1... Nice job and continued healing - Thanks for posting. Very good video graphic represention of ccsvi too..

The more press the better... even if they place the disclaimer at the end..

How many times have we watched drug commercials with extremely small print and a fast talking commentator squeezing all the side effects in... ???

Did you post in the tracking stickie? I hope to be posting their soon :-)


Top
 Profile  
 
 Post subject:
PostPosted: Sun Feb 14, 2010 3:44 am 
Offline
Family Elder
User avatar

Joined: Thu Oct 08, 2009 3:00 pm
Posts: 113
Hi Beth, that no proof bit bugs me too. He's from the M.S. society here.
It does give me a good feeling though to see how far they are digging themselves in. Eventually they will have to admit they were wrong. I'll enjoy that.

Popsy09, I used to suffer from fatigue but not any more. In the clip I look very fatigued though, the day before I had massively overdone it at the gym. Then barely slept that night. The fact though that I was able to do so much without my fatigue stopping me was a good sign I think.
The treatment went well, there were no problems.


Top
 Profile  
 
 Post subject:
PostPosted: Sun Feb 14, 2010 3:55 am 
Offline
Family Elder
User avatar

Joined: Tue Oct 20, 2009 3:00 pm
Posts: 218
Location: Worcestershire, U.K
Well done Wonky. It's amazing to see you there promoting CCSVI.

You should be very proud of yourself!!!

Claire


Top
 Profile  
 
 Post subject:
PostPosted: Sun Feb 14, 2010 8:09 am 
Offline
Family Elder
User avatar

Joined: Sun Aug 30, 2009 3:00 pm
Posts: 402
Location: Chandler, AZ
Hey Wonky,
Hold on to your hat, because, if you are like me anyway, the lack of fatigue just keeps getting better! I have gone from being able to get maybe one errand a day done at the most to being what I think is pretty much normal, and I even have more energy than some of my non-MS friends. I hope this will be your experience too!
Way to go!
Beth

_________________
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.


Top
 Profile  
 
 Post subject:
PostPosted: Sun Feb 14, 2010 8:27 am 
Offline
Family Elder
User avatar

Joined: Thu Oct 08, 2009 3:00 pm
Posts: 113
Beth, I think I love you :D

Martin


Top
 Profile  
 
 Post subject: hello martin
PostPosted: Sun Feb 14, 2010 10:58 am 
Offline
Family Member
User avatar

Joined: Mon Oct 29, 2007 4:00 pm
Posts: 90
i thought you sounded quite well and looked andsome. my question is you seemed quite stiff when the little bit you walked. i though you said your spasticity was gone. I only ask because spasticity (tightness is my biggest complaint ans when it reduces I move sinificantly faster and smoother. Maybe what I am seeing is weakness in that you need to build up muscle. I know I will need a ton of gym time after the opertion I just wonered. Barbara


Top
 Profile  
 
 Post subject:
PostPosted: Sun Feb 14, 2010 11:12 am 
Offline
Family Elder
User avatar

Joined: Thu Jan 14, 2010 4:00 pm
Posts: 481
Location: Italy
Wonky, so that was you 8)!!! Great video! And keep up improving!
I have seen the video but did not know...

Hey, who would have thought that so many on TIMS will be movie stars :wink: ?! I'm proud of you guys/girls! You are so active and help so much to move this all forward! You are so strong and amazing....! Thank You !!!

Steffi


Top
 Profile  
 
 Post subject:
PostPosted: Sun Feb 14, 2010 12:15 pm 
Offline
Family Elder
User avatar

Joined: Thu Oct 08, 2009 3:00 pm
Posts: 113
Thank you all for your kind words.
jak7ham9 When I say I used to have spasticity, I mean I would spend most of the day laying glued to the sofa. When I tried to get up my legs would stay straight and I would have to try and bend them with my hands, not easy.
Since liberation that has not happened.
I still walk like frankenstein and I need to build muscle in my legs but overdoing it at the gym does not help the next day.


Top
 Profile  
 
 Post subject:
PostPosted: Sun Feb 14, 2010 1:25 pm 
Offline
Newbie
User avatar

Joined: Fri Feb 12, 2010 4:00 pm
Posts: 6
Thanks for your reply winky1, hope things continue to improve for you, keep us posted! :)


Top
 Profile  
 
 Post subject:
PostPosted: Sun Feb 14, 2010 1:51 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8556
That was great, I thought it explained CCSVI quite simply and well!

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition


Top
 Profile  
 
 Post subject:
PostPosted: Sun Feb 14, 2010 2:43 pm 
Offline
Family Elder
User avatar

Joined: Sun Nov 29, 2009 4:00 pm
Posts: 763
Location: NYC
Saw this before, didn't know it was you Wonky1
Good show!! and the explanation of CCSVI they gave was short, concise and better than most.

Quote:
Dr Doug Brown, Biomedical Research Manager at the MS Society, said: "These results are intriguing but it is important to remember that although people with MS may show evidence of CCSVI in screening studies, there’s no proof as yet that this phenomenon is a cause of MS, nor that treating it would have an effect on MS.

I think the Drs are as confused as we are as to what MS is ! so they continue, in the light of true improvement, to issue these absurd statements.

thanks for this info and keep us posted Wonky1


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 20 posts ]  Go to page 1, 2  Next

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Report

seabee22

0

735

Mon Mar 15, 2010 9:29 am

seabee22 View the latest post

There are no new unread posts for this topic. Another 3mo report

Sawdoggie

4

1223

Sat Nov 06, 2010 4:48 pm

blossom View the latest post

There are no new unread posts for this topic. Hi all, final pre-op report.

[ Go to pageGo to page: 1, 2 ]

CureIous

19

2442

Tue Aug 04, 2009 8:13 am

peekaboo View the latest post

There are no new unread posts for this topic. CBC News Report

bruce123

2

1174

Tue Sep 14, 2010 7:08 am

erinc14 View the latest post

There are no new unread posts for this topic. Scan Report Plese let me know what U Think

seabee22

2

1043

Wed Mar 17, 2010 7:47 am

seabee22 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:  


News News Site map Site map SitemapIndex SitemapIndex RSS Feed RSS Feed Channel list Channel list
Read hundreds of personal Multiple Sclerosis stories on Experience Project. Experience Project is an anonymous community where people connect through their life experiences, made by the same people who built This is MS. With over 30 million personal stories about every possible life experience, you can quickly find people like you!


Interesting: Secret Confessions | Dream Meanings | Ask Questions, Get Answers

Advertise on the premier multiple sclerosis forum