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    #16
    Originally posted by Boymom123 View Post
    She is thinking now that my prognosis is good. Am I being dumb for not taking Tysabri right away?
    Not at all – but have you heard that saying, "MS is not bad until it is"? The thinking now is that nobody with this disease in early stages should be diagnosed as "mild." They have no way of knowing what is going to happen in anyone's disease course, and the reality is there is no cure yet and this is a progressive disease.

    I was diagnosed in 2000 as mild or benign and it was that way for quite a long time – and now it isn't. I have been on Tysabri and it was the only DMD that I felt did anything. I would still be on it if I hadn't developed an allergic reaction to it.

    My recommendation is not to be lulled by the "mild" diagnosis into complacency like I was. If you qualify for Ty infusions, I would read up on its efficacy and if you feel fairly comfortable, go for it. Nothing currently prevents all damage but the more damage you avoid early on (and I personally look for at least 50-60% efficacy rate), the better off you will be.

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      #17
      Yep... I was fine one day, no symptoms and my life changed the next. You have no warning that MS is making a left turn. You only know once it has.

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        #18
        So I get 2 good years then what?

        i appreciate everyones reaponses - than you

        But from all I have read It seems you get 2 years on Ty then have to get off. Then what? There aren't many options left except Lemtrada. Nothing else in the pipeline. So if I do Ty (assuming JCV neg) then get off, I am then stuck with a downward spiral after that with no other options.
        Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

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          #19
          I have zero experience to talk but I've read where many people are on it for 6,7,8 years now. Even after being JVC positive.

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            #20
            getting JCV results

            Boymom123,
            I'm just curious, when do you think you will have your JC virus results? I think getting that information may help you to make a definite decision one way or another.

            My understanding is that "generally" if you are a candidate for going on Tysabri (meaning you are JC neg or very low titer) you can usually be on it a minimum of 2 years. But as Shel67 pointed out, many stay on it for many more years. (In these cases they are generally still low on their JC virus titer/negative or else have strong convictions of staying on it despite a mid to high JC titer).

            If needing to go off it in two years (or whenever), you're right; it seems like many go to Lemtrada. As it stands now, I'd say another option would still be going on another one of the oral meds.

            In my case, I was JC virus negative when having to make this decision. For me, that made me feel a lot more secure about making the decision. However, that being said it's ridiculous how worried I am about this JC virus that shows no symptoms. I over think and worry about exposure to possible germs and such. My doctor will monitor my JC status after being on Tysabri for 3 months and then every 3 months afterward. I get it checked in August and that will be the first time.

            Good luck!
            RRMS Dx: 3/23/15
            (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
            Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

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              #21
              Originally posted by Boymom123 View Post
              i appreciate everyones reaponses - than you

              But from all I have read It seems you get 2 years on Ty then have to get off. Then what? There aren't many options left except Lemtrada. Nothing else in the pipeline. So if I do Ty (assuming JCV neg) then get off, I am then stuck with a downward spiral after that with no other options.
              I am now on it 3 years. I am still JCV-, so fortunate. I now get tested every 3 months for virus/titer. But even if positive, it is no longer standard practice to pull you off at 24 months. It depends on the titer number. The higher the number, the greater the risk. Neuro should evaluate risk based on the titet and how long you have been on Ty.


              I do wonder if I had been on Ty early, rather than 1.5 years Avonex, 5 years Rebif if I would have experienced the progression I have. When diagnosed, I had minor tingling in right hand, L'Hermites, and other minor numbness. Very Mild...

              Mild until it is not...
              Kathy
              DX 01/06, currently on Tysabri

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                #22
                Thank you all so very much for your responses and your kindness in educating me. So much is still overwhelming. I will be tested for JCV at my appointment in August (my neuro wants to see me every three months for the first year after diagnosis at a minimum). She already told me at my May appointment that she was going to do that. After that, I will have more information. I also want to see how my November MRI looks. Since my last MRI (prior to diagnosis and prior to starting Copaxone), I believe I have had 2 possible exacerbations (we are questioning one of them). So we will be able to compare MRI's to see if there are more than 2 additional lesions (representing the exacerbations) or if other lesions have grown. With the complete picture, I will make more decisions.
                Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

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