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#1 | ||
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Member
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Well, my next Tysabri infusion was scheduled for this Wed April 6th, I cancelled it and scheduled with my neurologist. So, I see him on Wed instead of having the infusion.
I have had a lot of negative side effects since the infusion too, the most uncomfortable and scarey is that my heart feels like it is beating out of my chest.....and now that my JC Virus test is positive, I want to discuss what other options I have at this point. Thanks everyone.....I really appreciate all of your comments. It is nice to hear what someone else would do in the same situation. I am afraid to do nothing, as I had 5 additional brain lesions in a 9 month period....but truly I don't see using one of the ABC-R. The effectiveness is just not enough, considering that they have found out now that the interferons only work for 50% of MS patients. I think placebo effect was pretty close to the actual effectiveness of the ABC-R's.
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Dx: RRMS Jan 2010; LDN: March 2010-Dec 2010; Aug 2012-Nov 2012 Tysabri: Feb 2011-March 2011 reaction Gilenya: August 2011 reaction Copaxone: October 2011 reaction Tecfidera: May 2013 reaction |
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#2 | |||
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Member
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Quote:
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Multiple Sclerosis Diagnosed August 2010 |
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"Thanks for this!" says: | daisy.girl (04-11-2011), Dejibo (04-10-2011), dmplaura (04-11-2011), ewizabeth (04-10-2011), SallyC (04-10-2011) |
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#3 | |||
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In Remembrance
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So, what was your decision, Daisy? How are ya doing?
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | daisy.girl (04-11-2011), dmplaura (04-11-2011) |
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#4 | ||
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Member
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I saw my neuro, and he thought that the fast heart rate, internal tremor that I was feeling was actually an increase in my heart rate, which is a reaction to the Tysabri. He also thought that I should try one more with the rate of infusion slowed down. He really wasn't too concerned that my JC Virus titer was positive, he said that I could still have up to 24 infusions with a positive titer.
I told him I would think about whether or not I wanted to try anothe Tysabri infusion or not. I am having company all of next week, so I am not going to do anything until after that. Please pray that I make the right decision for me.
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Dx: RRMS Jan 2010; LDN: March 2010-Dec 2010; Aug 2012-Nov 2012 Tysabri: Feb 2011-March 2011 reaction Gilenya: August 2011 reaction Copaxone: October 2011 reaction Tecfidera: May 2013 reaction |
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#5 | |||
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Magnate
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I'd be wondering myself where he pulled this number of '24' from (unless he disclosed the source to you).
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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"Thanks for this!" says: |
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#6 | |||
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Member
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The '24' is probably his Guesstimate of the risk. The test is actually not for the Virus, it is for Antibodies to the Virus, which may indicate a possible higher risk. You just have to decide if the benefits out way the risk.
If it gives you a much higher Quality of Life you may be willing to assume a higher risk. It can be a very difficult decision.
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Bill SCUBA, the true meaning of Life San Francisco Maru 2009 USS Monitor 1996, 1997, 1999 Andrea Doria 1996, 1998 USS Wilkes Barre 1991 |
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#7 | ||
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Junior Member
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I was told by my neurologist that Tysabri was the ONLY THING left for us to try; exhausted all the A, B, C & R drugs can no longer take them for one reason or another. I knew he was involved with the trials testing for the JVC virus & I INSISTED on being tested BEFORE I would even consider Tysabri. The results came back last week I TESTED POSITIVE FOR THE JVC VIRUS!
Trouble has a tendency to find me with me having to look for it so NO I WILL NOT TAKE MY CHANCES ON TYSABRI KNOWING I HAVE THE VIRUS & IF I WAS TAKING IT & FOUND OUT AFTERWARD I WOULD STOP IMMEDIATELY!
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"OUR LIVES BEGIN TO END, THE DAY WE BECOME SILENT ABOUT THINGS THAT MATTER" |
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