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Tag: living with multiple sclerosis

MS, exercising and me

MS, exercising and me

I’m Back to pushing my body. Not that this is something new with me. This is what I’ve always done. I have a MS, I know that, but I push it to the limit. Sunday and today I did a 55 minute Zumba class. I haven’t done the longest class in I would say almost a year and a half. I used to only work out for 45 minutes or more. Things started to change actually when I got my…

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Combo pill offered for high dose biotin and alpha lipoic acid

Combo pill offered for high dose biotin and alpha lipoic acid

I was informed by my friend that my pharmacy now makes a combination pill. It’s the same three pills a day, but it now has in addition to the hundred milligrams of biotin, 400 mg of the Alpha lipoic acid. You can click on the pill bottle on my webpage or you or you can click on the link I provided below. https://highdosebiotin.net/ Alpha lipoic acid has been studied to help in secondary progressive MS. https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/lipoic-acid Studies in animal models…

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Application for high dose biotin (MD1003, Qizenday) withdrawn from European Market

Application for high dose biotin (MD1003, Qizenday) withdrawn from European Market

I found this article that in December of 2017, the application for high dose biotin has been withdrawn from the European market. https://www.mstrust.org.uk/news/news-about-ms/high-dose-biotin-withdrawn-european-licensing The European Medicines Agency (EMA) has been examining data on high dose biotin (MD1003, Qizenday) since the application was accepted in September 2016. At a meeting last week, the EMA’s Committee for Medicinal Products for Human Use (CHMP) concluded that the clinical data from two trials that enrolled 253 patients was not sufficient (link is external) to…

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Pictures of what makes me happy

Pictures of what makes me happy

I’m happy to say I’m all done with Ocrevus for six months. I just have to deal, of course, with the side effects from the steroids. I have to be honest too, these medicines and these infusions mess with my mood. I feel like I haven’t been my happy self in so long. I’m back to living in my four walls of a MS because I haven’t left my apartment. I’ve gone out for physical therapy and a couple errands…

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Second half of Ocrevus infusion today

Second half of Ocrevus infusion today

I should be done. I should be done with the side effects from the steroids. I should be done with sitting there for 5+ hours. I should be done with the Benadryl. Yet I am not thanks to the infusion place ordering the wrong dosage amount last week. I once again have to go in today. I decided not to wait two weeks like when you first start Ocrevus because I just want to get it done. I once again…

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Daylight savings Spring forward

Daylight savings Spring forward

Daylight savings was Saturday night. Clocks went ahead one hour. I normally hate daylight savings. Especially the one in the spring when you lose that our sleep. It just throws me off for days. My daughter came home at about 11 o’clock upset on Saturday evening. She was working so i couldn’t understand her mood. I thought it was because of Saturday afternoon. She was out doing a couple of errands because we only have one car now (mine is…

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Boom I Got Your Boyfriend by M.C. Luscious

Boom I Got Your Boyfriend by M.C. Luscious

I’m going way old school here. This song is in my Turbo Fire work out with Chalene Johnson. This is my favorite songs in the workout program. I actually purposely picked this program because of this song. The good thing it comes on second to last so ensures that I make it through the program. 45 minutes of kickboxing, bet you never saw that in a chair? https://youtu.be/mmEpgnRGZTI Boom! I got your boyfriend, I got your man Boom! I got…

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What am I taking for Multiple Sclerosis

What am I taking for Multiple Sclerosis

Over 20 years I have been on many different drugs. I’ve stop taking things and started taking things. There are many drugs I’ve taken for the MS itself and many for its symptoms. I figured I list all the things I take right now from my MS. I’ve also included links to clinical trials and a couple of drugs I recently stopped taking. Ocrevus this is my main drug for relapsing remitting MS. I take it through an IV once…

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Juicing through an infusion

Juicing through an infusion

I’m happy to report I’m feeling better. Im also happy to report it’s Friday. I think these weeks seem to be speeding up again. Maybe it’s because I’m older. I just feel like I was just writing about it being Monday. I’m still keeping my schedule light for the weekend. I just wanted any possible side effect from the last Ocrevus infusion to not be an issue. However when I made the schedule, I was expecting to have taken the…

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Steroids and steroid withdrawal

Steroids and steroid withdrawal

When i’d have an MS relapse, I would take 1000 mg a day in an IV for four days. Then you would’ve taper off from that thousand milligrams to an 80 mg pill three times a day and continue down to a 60, 40, 20 etc.. To me, that taper, always still made me sick because going from that 1000mg to 80mg was such a huge jump. My body would always have the steroid withdrawal anyway so I stopped doing…

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