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Hello, I was diagnosed with RRMS on March 25, 2021 and to say that I have been in educate myself OVERDRIVE is an understatement!

I am currently considering a Clinical Trial for the MS medication / iv infusion Ocrevus and would love to hear from anyone that has tried this treatment or is currently on this treatment. (?)

Thank you in advance & please know I truly appreciate your feedback
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  1. I have been on the medications for 2 years and I've had no more new lesions show up and no more worsening symptoms can I go to the Cleveland clinic to get it

    1. And goto the Cleveland clinc

      1. Hi
        You're going to have a lot of information thrown at you and it's easy to get overwhelmed. It's a blessing to have these forums as a source of peer support and info- they didn't exist 11 years ago when I was diagnosed.

        I will tell you no to MS patients are the same in regard to our symptoms or response to medication. That said I will tell you my experiences. I've been on (in order) Avonex and Copaxone- neither worked for me. Tysabri- absolutely wonderful drug that not only stopped flare ups but actually improved MRI results for years, then for many reasons I had to stop it. I took Ocrevus and was ill for 5 months after. I have one friend who experienced the same but three others who've had no issue. I'm currently on Mavenclad, will start year two next week actually and it's been great for me.
        I wish you the best. Kim

        1. I just had my first Ocrevus infusion this week. The first half of the first dose. I was quite tired coming out of it but was able to SAFELY drive home. My head was clear but my body was tired. Watching them pump that juice into my arm was a real hard thing for me, emotionally. I want it, but am angry or sad or scared (or all of the above) about the fact that I need it. Maybe it is making this all so real for me. I had my first "diagnosis" by a receptionist about 2 years ago. She told me (not my Dr.) I had MS even though I didn't have any clue why I had the extensive MRIs the week before. Since then I have been trying to understand myself and what this can mean for me. My formal diagnosis came last month from my neurologist.
          Had some low-grade headaches since but they respond to otc migraine pills. My energy seems lower but similar to last week. Had some intense night sweats the first night but it has been minimal since then. I sleep in a rather cool room. Otherwise there is not much difference that I can feel. I am cautiously trying to resume my "exercise" as best as I can but I don't want to overdo it. In my heart, I am glad there is something that can be done for this - hopefully.

          What else is in store for me? This is all still so new for me.

          1. Hi . I hope you don't experience many side effects from Ocrevus and that it helps. A new diagnosis can be so overwhelming. It is natural to want answers, but there is so much uncertainty with MS that it can be really hard to wrap your head around it at first. Everyone progresses differently, so you can't predict the course your own MS will take. Here is a wonderful article from one of our advocates for people who are new to MS: I hope you get some comfort from it. Know that we are here for you whenever you need support or a place to vent. You have a whole community here of people who get it. Thinking of you. - Lori (Team Member)

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