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Tag: ms over 10 years

Drug Zinbryta, used for treatment of multiple sclerosis, pulled from market

Drug Zinbryta, used for treatment of multiple sclerosis, pulled from market

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(CNN)In a rare move, the companies that make the multiple sclerosis drug daclizumab (brand name Zinbryta) have voluntarily pulled the medication from the market and stopped all clinical studies after reports of eight cases of serious brain inflammation among patients in Europe Read the full article here: https://www.cnn.com/2018/03/02/health/ms-drug-daclizumab-pulled-bn/index.html Each one of the drugs we take to keep as well, has side effects. You have to weigh the odds, the pros and cons of each of these medicines. I’ve been taking…

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A Rainy Day in NY

A Rainy Day in NY

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Does rain ever affect your multiple sclerosis? I find lately that the moisture in the air does have a small impact on my day. It’s certainly plays a role with my migraines. I’ve had headaches basically all week. However today they are expecting a nor’easter. New York State agencies are gearing up for a Thursday-to-Saturday nor’easter that could drench and blast Long Island with rain and high winds and envelop upstate with snow, officials said. From the moment I woke…

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It never ends…Ocrevus infusion postponed continued

It never ends…Ocrevus infusion postponed continued

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So yesterday morning I’m sitting here and I get a call from my insurance that the expedited review for ancillary services, a.k.a. the infusion, has not been deemed necessary. Therefore the review will be conducted at the usual standard time as per policy. WTF???? I thought the problem was they didn’t order the drug? Turns out they never got authorization to get the drug or to administer it. Authorizations have to go to my doctor. My first step started when…

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Second Ocrevus infusion postponed

Second Ocrevus infusion postponed

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I received a call at 5:15 yesterday, the reason why is the kicker. The pharmacy didn’t have it in stock they had to order it. Well duh, it is a specialty drug not a stock item, of course it had to be ordered!!!! I not only made this appointment 6 months ago but I recently changed the date from Monday to Wednesday. So I’ve spoken to the infusion place a few times over the last few weeks. You’d think maybe…

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A day in the life…

A day in the life…

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I’m seeing my sister from California today. She’s in for a very, very fast visit to New York and is coming out to Long Island for the afternoon. Yippee. I haven’t seen her in a while, she lives so far. I’m excited to spend some time with her today. First this morning I have to go to the doctor, yet again, to re-do bloodwork. Something where they didn’t take enough blood to get the test they required done. I don’t…

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One of those mornings

One of those mornings

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I jarred my head something fierce this morning. Getting up to go to the bathroom, my knee buckled, and I went down. I slammed into my floor and I just laid there stunned for a few seconds a little dazed. I just woke up it was little after 6:30, it happened so fast. I decided not to go back into bed to lay down for another half an hour, because I’m not 100% sure that I didn’t give myself a…

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Multiple Sclerosis drugs, vitamins and therapies

Multiple Sclerosis drugs, vitamins and therapies

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I kicked ass this morning. New workout and I stood on my feet for a record of 18 minutes. Omg!!! That’s incredible. Granted my feet can’t move too much, but that’s ok, that was an tremendous amount of time. In physical therapy, one of the main things they do for people with multiple sclerosis, or people that can’t really stand on their own anymore, is put them in a device that either stand them up or strap them in bars…

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A Wednesday hodge podge

A Wednesday hodge podge

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It’s a vision of white outside my window That’s not snow, it’s fog. I can’t see the water at all. The mist down by the water is definitely something I have to get use too. I’ve woken up many mornings to that view instead of this The fog reminds me of the Stephen King short story called The Mist. I think they made a movie out of it. It’s eerie to look at but also cool in its own way….

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A tough morning

A tough morning

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I’ve added my Beachbody workouts back into my morning. I know that I push my body to its limit when I do these. I also know my body needs a long recovery time. I usually plan accordingly. Today, I didn’t plan on issues with Zoey too. I had to stop my workout to “clean up” after Zoey. Not normally a big deal but my legs were already 20 minutes into the workout. I ended up sliding down on the floor….

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When in doubt, blame multiple sclerosis

When in doubt, blame multiple sclerosis

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When I first was diagnosed, maybe in the first 10 years, I have to admit any little thing I felt I used to think immediately it was the multiple sclerosis. It took me a while to kind of know how MS showed in my body, really what MS was, and how it was going to affect me. Now that it’s been 20 years, I think what I find amazing is when other doctors don’t have an answer so they blame…

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