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Old 12-20-2014, 06:32 PM #471
Grammie 2 3 Grammie 2 3 is offline
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I am betting on you
Ditto to what Sally and Natalie said.. more deep breaths. I wish you peace, serenity and clear thinking to do what is best for you!
Linda
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Old 12-20-2014, 06:35 PM #472
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just had a brain f--t.. a different infusion center-they do not all charge the same.
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Old 01-02-2015, 09:56 AM #473
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#50 logged in! 6 1/2 years total. Still going strong. Still using hand sanitizer religiously so I don't get the JC virus. Although who knows how it's transferred? My neurologist said last week it's likely through saliva, cold/flu like ways. So his advice -- never share a beverage with anyone! But I learned that lesson after I got mono at age 39 -- which I think tripped the switch and led to the MS.
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Old 01-04-2015, 03:20 PM #474
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Happy New Year!! I hope 2015 will be a very good year for everyone

Tues I will go for my infusion-somewhere over 100 Now that I go every 6 weeks I have lost count Oct I started my 9th year YAY!

Linda
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Old 01-12-2015, 02:49 PM #475
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*knock knock*

Can I join you lovelies here? I just went to my neuro and he agrees that my ms is getting worse on Betaseron and so we are going to try Tysabri! I'm very happy with the decision.

Had my JCV blood test done and will hear back from that soon. Anyone know how likely it is that someone will test +?
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Old 01-12-2015, 05:36 PM #476
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Welcome msbelle
I do not have an answer to your question, but even if + you can take Tysabri for 2 years with very little to no risk of pml. It would be great if you are -
I have been in the indeterminate range for over a year. The range is .2 or less neg - .4 positive - I have been .24-.28 and most recent .21-.25.
Good luck!
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Old 01-15-2015, 05:15 PM #477
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I read that something like 56% of Canadians are JCV +? That's nuts. I'm still waiting on results from my test.

BUT, funding has gone though and the infusion centre should call me tomorrow to set up my appt NEXT WEEK! Can't wait.
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Old 01-16-2015, 07:38 AM #478
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Hey there

It is true that around half of the population is JCV+ ... which is sad for us. Your titre level will be important though. In Australia, if you are over 1.5 then they want you to stop using Ty - I am 2.406. As yet my doc hasn't made me stop so I have stayed on this last six months. Will be seeing him in early Feb so that may change.

It all comes down to what you deem as acceptable risk. I haven't quite figured out mine, but for whatever reason I don't like the sound of the oral meds.

All you can do is research and work out what is right for you.

Here's hoping you are JCV- because it is a wonderful drug.

Regards
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Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993.
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Old 01-16-2015, 01:54 PM #479
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They're starting me on Tysabri ASAP even without the JCV results. Is that normal?
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Old 01-16-2015, 07:34 PM #480
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You can always stop if your titers are high. Hope it works for you.
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