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 Tue Jun 18, 2013 10:19 pm


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 5 posts ] 
Author Message
PostPosted: Tue Oct 12, 2010 7:15 am 
Offline
Newbie
User avatar

Joined: Mon Oct 11, 2010 3:00 pm
Posts: 1
I have secondary progressive ms. Recently got a second opinion at U of M multiple sclerosis center. The options I received were continue taking Beta Seron and continue progressivly getting worse or try Tysabri to stop the progression. Doctor would not acknowledge the possibility of ccsvi as a treatment. I have not found many people (that I have read about) that have spms with good results from tysabri. If the surgery for ccsvi is done and you are put on blood thinners does that mean you cannot try tysabri?
I know I have to do something to stop the progression, just trying to get all the information to make an educated decision.
My regular neurologist would not give an opinion on tysabri, he said he is not against it but not for it (very neutral position)
This is my first post-hopefully I am doing it correctly.


Top
 Profile  
 
 Post subject:
PostPosted: Tue Oct 12, 2010 8:32 am 
Offline
Family Elder
User avatar

Joined: Sun Nov 22, 2009 4:00 pm
Posts: 335
Dino, this is a decision only you can make. Tysabri is a mainstream somewhat effective treatment with some risk. CCSVI is still outside the mainstream, has very little risk, and appears to have great promise. I can't see any reason why you can't go for the liberation procedure while on Tysabri, I believe there are several people in this category.
What I would do (realize I'm not a medical person)
1. Make lifestyle changes - like the best bet diet.
2. Go for the liberation procedure.
3. THEN decide if you want to be on Tysabri.


Top
 Profile  
 
 Post subject:
PostPosted: Sat Oct 16, 2010 4:57 pm 
Offline
Family Elder
User avatar

Joined: Sat Dec 20, 2008 4:00 pm
Posts: 582
Location: Greece
Isn't Tysabri only approved fror use in RRMS? I think its results on SPMS were quite disappointing.

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."


Top
 Profile  
 
 Post subject:
PostPosted: Sun Oct 17, 2010 9:02 am 
Offline
Family Elder
User avatar

Joined: Wed Sep 15, 2010 3:00 pm
Posts: 130
Let me throw this in, one problem with mixing mainsteam with non mainstream is there are not many answers.
Tysabri carries an increased risk of infection, so I would not have any kind of procedure while on that I could not be totally honest with my dr's about.

It has yet to be proven that CCSVI is the answer yet.
That it stops progression yet.
That every dr who is doing knows what they are doing yet.
It is not an easy decision to make.
It is made harder when people jump on the wagon with an answer
That appears to be based in a scientific answer IMO.
God's speed in choosing


Top
 Profile  
 
 Post subject: url for seconday ms
PostPosted: Sun Oct 17, 2010 9:06 am 
Offline
Family Elder
User avatar

Joined: Wed Sep 15, 2010 3:00 pm
Posts: 130
http://www.everydayhealth.com/multiple- ... ve-ms.aspx

this may be why some with secondary seem to helped while others don't seem to be. I have seen some helped and some not.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 5 posts ] 

All times are UTC - 8 hours [ DST ]


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

Alicia

1

934

Tue Sep 29, 2009 8:27 pm

Sharon View the latest post

There are no new unread posts for this topic. ACL Surgery

Alicia

1

790

Mon Sep 06, 2010 2:46 am

MrsGeorge View the latest post

There are no new unread posts for this topic. Having surgery tomorrow, first since MS dx

flora68

12

2246

Thu May 09, 2013 12:49 pm

jimmylegs View the latest post

There are no new unread posts for this topic. Laser eye surgery

[ Go to pageGo to page: 1, 2 ]

bromley

23

3313

Thu May 31, 2007 11:21 am

Minai View the latest post

There are no new unread posts for this topic. question re surgery

Catundra

6

1369

Wed Apr 09, 2008 10:33 pm

DIM 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