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Tag: relapse remitting multiple sclerosis

How do you feel after an infusion?

How do you feel after an infusion?

It’s funny because all my complaining last week about NOT getting my infusion leads to this: I feel awful. Please, please give me my medicine. Pump me up with all this shit so I can feel lousy.  kind of makes you wonder what the hell I was I fighting for. All anxiety for four days straight. All so I could feel horrible. Rituxan Infusion Finally Done but still wasn’t smooth. It never fails someone always asks me, does it…

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Gradual disease progression

Gradual disease progression

How are you feeling? Seems that this is always the question asked by everyone that knows me. Today, I asked myself. I have written many blogs about lack of sleep Sleep deprived, many about accidents A horrible and humbling outing, and even some on actual feeling How are you feeling? The truth about Parethesia, but it’s been a while since I actually said how I was feeling. I’ve had multiple sclerosis for 22 years now. My disease modifying therapy is…

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Secondary Progressive Multiple Sclerosis

Secondary Progressive Multiple Sclerosis

For my wheelchair evaluation, I’m going out…my wheelchair evaluation my neurologist needed to submit a letter of need. Due to the coronavirus, we did this via teleconference the second week of April. He’s been my neurologist for 22 years. He has files upon files upon files on May. We laugh, actually, at how many times my files have been thinned and moved to storage. My file still always remain as thick as medical encyclopedia. I explain this so you know…

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After I got diagnosed with MS what I’d change

After I got diagnosed with MS what I’d change

I guess this is kind of like a part two to yesterday’s blog before I was diagnosed. https://multipleexperiences.org/2018/06/25/before-i-had-multiple-sclerosis/ What I’m not going to write here is about my attack in 2014 that really disabled me. What I am going to say is what I would change if I could go back. Again hindsight is 20/20 but this is for the newly diagnosed and people more on the early side of their onset of multiple sclerosis. When your first diagnosed, it’s…

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My disabling MS attack in 2014

My disabling MS attack in 2014

It wasn’t always a battle. I remember at 40 I was still walking pretty good. I’d have a limp every now and then, when my legs were tired, but an outsider would never know. I’d have occasional bathroom accidents that I used to hide, but back then it was easier. Most of my symptoms were invisible. My balance was never great and I wasn’t running any marathons. Hell, I wasn’t walking any marathons either but I was nothing like I…

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Update on the European withdrawal on high dose biotin application

Update on the European withdrawal on high dose biotin application

As promised it was the first question I asked my neurologist. She explains that the study had 93 people in it. According to the study, over the course of a year, of the 93 people enrolled something like 20 of them had relapses that I never had a relapses before. That’s why they deemed that the high does biotin was not effective. This is the information on the application for the withdrawal. http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/004153/wapp/Initial_authorisation/human_wapp_000247.jsp&mid=WC0b01ac058001d128. Well my doctor explained that she, as…

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No questions for my neurologist

No questions for my neurologist

My mother sent me a text yesterday to write down the questions I have for the neurologist. It’s been 20 years, what questions do I still have for the neurologist? I know the research, I know what’s out there and I know what I’m on. Unfortunately, there is nothing for secondary progressive and therefore there is nothing that will stop the MS progression at this point. I’m very positive, but I’m also a realist. I’m not gonna run around with…

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

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

(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

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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My 20 year anniversary with multiple sclerosis

My 20 year anniversary with multiple sclerosis

It just dawned on me, that February 14 was my 20 year anniversary with MS. It was the weekend of February 14 that I was moving it to my house with my ex-husband. My left leg started to feel numb. The numbness started traveling up my leg through my muscles. I wasn’t just numb, my muscles were becoming week and atrophied. It was The following Friday I went to a family doctor who sent me immediately to this neurologist. To…

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