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#11 | |||
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Magnate
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I figured it like this:
Chances of MS? Roughly 1 in 75,000 (in Canada). (*That's a very rough estimate). I have MS. Chances of PML from Tysabri? 1 in 1,000. ![]() For having a disease for approximately 8 years now (going by my neurologist's best guess) and having sensory symptoms only.. Tysabri for me is not worth the risk, what so ever. I'd go back to site reactions, muscle spasms, bed wetting and horrific nightmares on Copaxone before Tysabri ever crossed my radar.
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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 Last edited by dmplaura; 03-31-2011 at 09:43 PM. Reason: I made boo boo, thanks Erin! |
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"Thanks for this!" says: | daisy.girl (04-01-2011), SallyC (03-31-2011) |
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#12 | |||
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Elder
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Is mono where the JC virus comes from??
Good thing I'm not planning on every trying Tysabri then. I had a nasty case of mono about a year before I started getting bizarre symptoms that eventually turned out to be MS about 10yrs later.
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~ Never do anything that you wouldn't want to explain to the paramedics. ~ Author Unknown ~ ~ "Animals have two functions in society. To taste good and to fit well." ~ Greg Proops, actor ~ |
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"Thanks for this!" says: | daisy.girl (04-01-2011) |
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#13 | |||
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Magnate
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Quote:
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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: | daisy.girl (04-01-2011), SallyC (03-31-2011) |
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#14 | |||
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In Remembrance
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No!! It is a totally different kind of virus.
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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 (04-01-2011), dmplaura (04-01-2011) |
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#15 | |||
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Elder
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I would stop immediately! Without a doubt!
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Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
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"Thanks for this!" says: |
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#16 | ||
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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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#17 | |||
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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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#18 | |||
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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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#19 | ||
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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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#20 | |||
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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).
__________________
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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