Tysabri or liberation surgery?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Tysabri or liberation surgery?

Postby Dino » Tue Oct 12, 2010 7:15 am

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.
User avatar
Dino
Newbie
 
Posts: 1
Joined: Mon Oct 11, 2010 3:00 pm

Advertisement

Postby tzootsi » Tue Oct 12, 2010 8:32 am

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.
User avatar
tzootsi
Family Elder
 
Posts: 367
Joined: Sun Nov 22, 2009 4:00 pm

Postby sou » Sat Oct 16, 2010 4:57 pm

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."
User avatar
sou
Family Elder
 
Posts: 582
Joined: Sat Dec 20, 2008 4:00 pm
Location: Greece

Postby stillfighting » Sun Oct 17, 2010 9:02 am

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
User avatar
stillfighting
Family Elder
 
Posts: 133
Joined: Wed Sep 15, 2010 3:00 pm

url for seconday ms

Postby stillfighting » Sun Oct 17, 2010 9:06 am

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.
User avatar
stillfighting
Family Elder
 
Posts: 133
Joined: Wed Sep 15, 2010 3:00 pm


Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: harry1