FAQ/Help |
Calendar |
Search |
Today's Posts |
|
![]() |
#1 | ||
|
|||
Member
|
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.
__________________
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 |
||
![]() |
![]() |
![]() |
#2 | |||
|
||||
Magnate
|
I'd be wondering myself where he pulled this number of '24' from (unless he disclosed the source to you).
__________________
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 |
|||
![]() |
![]() |
"Thanks for this!" says: |
![]() |
#3 | |||
|
||||
Member
|
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.
__________________
Bill SCUBA, the true meaning of Life San Francisco Maru 2009 USS Monitor 1996, 1997, 1999 Andrea Doria 1996, 1998 USS Wilkes Barre 1991 |
|||
![]() |
![]() |
![]() |
#4 | ||
|
|||
Junior Member
|
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!
__________________
"OUR LIVES BEGIN TO END, THE DAY WE BECOME SILENT ABOUT THINGS THAT MATTER" |
||
![]() |
![]() |
Reply |
|
|
![]() |
||||
Thread | Forum | |||
wondering... | Reflex Sympathetic Dystrophy (RSD and CRPS) | |||
Just Wondering.... | Service & Support Animals | |||
Wondering in wonder #169 | Survivors of Suicide |