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Tag: living with multiple sclerosis

How Roche Tweaked an Aging Drug to Keep Profits Rolling In – Bloomberg

How Roche Tweaked an Aging Drug to Keep Profits Rolling In – Bloomberg

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I blogged about this months ago. What’s amazing and messed up is I couldn’t get my insurance to pay for Rituxan forcing me to go on to Ocrevus when it cost so much more. I thank my stepmom for sending this to me this morning. It makes no difference but shows how the big business of the pharmaceutical world works. Is it ever only about the disease…   https://www.bloomberg.com/news/articles/2017-08-23/how-roche-tweaked-an-aging-drug-to-keep-profits-rolling-in?cmpId=flipboard

My Multiple Sclerosis from my parents view

My Multiple Sclerosis from my parents view

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My dad and I were talking about me having multiple sclerosis. He was saying it wasn’t fair, I have a good heart. My first words were I still have a good heart, that hasn’t changed but I knew what he meant. I heard this before from him, from my mom, my stepdad, from most of my family. They look at multiple sclerosis “stealing” away part of my life. I’ve discussed this topic a few times in my blogs.    …

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When will I learn, I can’t do that!!!!!

When will I learn, I can’t do that!!!!!

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I think I can still do things but I can’t. Today was one of those mornings. My coffee pot broke. I have one being delivered today from Amazon. I wanted to go to a local drive thru place to get a cup of coffee. Well after my fall on Sunday night, nobody wants me to leave the house my house without help. That’s still not a feasible requirement since the increased nursing hours are a few weeks away. Anyway, that…

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My first Ocrevus infusion

My first Ocrevus infusion

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The appointment was called for 11 but as I’m walking out my door, I received a call that they still didn’t have the pre-medicine orders from my doctor. After  that call was made, yet again, they informed me I can come at 12:00. I got there and it just took time to get things rolling. Except for a TV and a comfy chair, it was an institutional type of room. However, the people were very nice. I knew exactly what…

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Things that go bump in the night, or the concrete.

Things that go bump in the night, or the concrete.

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I got back from my sisters at close to 8pm last night. Whenever I go away and the trip ends, the highlight to coming home is seeing my dogs. No big shocking news there,especially if you follow my blog. I stepped out of my car and looked up at my window to wave hello to my marshmallow howling in the window. I do this every time I come home since his face started looking out for me. Well, unfortunately, last…

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If I didn’t have MS

If I didn’t have MS

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What do you say? Is it easy to imagine a different life? A life where you weren't sick. A life where walking wasn't difficult. A life where you can feel if your hair was dry or damp or your clothes are cotton or silk. Each year that goes by the image fades a little more. I've had MS for so long I can't imagine my life without it anymore. The girl who didn't need a walker passed away over 3…

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MS Fatigue…still the worst symptom

MS Fatigue…still the worst symptom

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It's better now or I wouldn't be able to write this blog post. I'm a happy passenger in the car, going to visit my sister for the weekend. My day started at around 6 when I woke up but laid in my bed meditating. I like doing that on my coach better but why waste the time laying there in my bed. I purposely showered and did my hair yesterday so I wasn't rushed this morning. It never fails a…

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What’s going on in a day in the life with multiple sclerosis

What’s going on in a day in the life with multiple sclerosis

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My Ocrevus infusion is going to be on Monday August 14 now. Not the worst thing. My infusion for Rituxan was scheduled originally for July 17th so the change to the new drug set us back roughly a month. My neurologist told me that even though Rituxan is given on a six month schedule, the drug could last up to 9 months effectively. I feel fine and now I only have 5 days to receive an infusion so I am…

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Ocrevus approved saga ended

Ocrevus approved saga ended

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Finally, after countless phone calls and so much unnecessary stress, my insurance approved Ocrevus. However in their approval, they didn’t approve me getting the infusion at Mt Sinai hospital where I was scheduled. I’m approved to go to a place on Long Island about 20 minutes from my house. Since I just got the approval at 5:30 on Friday evening, there was no way to get me scheduled at the new infusion site for Monday so it will be done…

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Ocrevus infusion not looking good for Monday due to insurance

Ocrevus infusion not looking good for Monday due to insurance

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Can you sue an insurance company for stress? I know you can sue debt collectors if their actions cause undue stress. I was wondering about insurance. The stress that I’ve been under for this last week dealing with my insurance is ridiculous. Everyday I speak to them I get a different answer. Yesterday I was told they were waiting for clinical notes and a copy of my last MRI showings I have relapse remitting MS. I can understand if this…

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