Catfreak's Recovery Notes

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby CRHInv » Wed Nov 18, 2009 8:34 am

Wow! It sounds like you just have tons of energy!!! I am so glad everything is going so well.
Take care!
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.
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Postby MaggieMae » Wed Nov 18, 2009 9:23 am

Cat,

This is a very important question (to me, anyway). My husband is also on Tysabri. You have choosen to remain on Tysabri and Lew (Loobie) has not. What is your reasoning for remaining on Tysabri? Do you plan to continue?
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Postby catfreak » Wed Nov 18, 2009 4:23 pm

Hi Maggie,

I believe Lew had a bad relapse on Tysabri and that was his reason for stopping. He was talking about doing LDN, I am not sure if he went forward with that.

I, on the other hand, have been relapse free since Tysabri. I don't like the way I feel for the 1st week after the infusion but then again, relapse free.

I think it's a hard decision to make. Most CCSVI patients seem to be continuing a treatment of some kind. I will not stay on Tysabri over 2 years, maybe 18 months. This was #9 for me and if I stay on it another year we will know more about the positive effects of the CCSVI Intervention and I will either get off the Ty and choose a oral med or just go med free. Which actually sounds the best to me.

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.
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Postby MaggieMae » Thu Nov 19, 2009 8:03 am

Cat,

My husband has had MS for over 35 years. He no longer has relapses, however, his decision to have the Tysabri infusions was to hopefully keep his limited walking ability. I think it has done that, but it hasn't helped his other symptoms like spasms, sleep, etc. He has been on Tysabri for 27 months.
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Postby Ana » Tue Dec 08, 2009 12:42 pm

Any news from catfreak?

It worries me that her last post is from November 23th. I hope that everything is well! :roll:

Ana
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