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Tag: diagnosed with MS

Self-love day 6- Doctors, doctors and more doctors

Self-love day 6- Doctors, doctors and more doctors

I’ve been eating right, exercising and going to the doctor as needed. A few weeks ago I saw my specialist for MS. I’ve been seeing a podiatrist for the fungus and the swelling blisters on my toes. Today I’m off to the vascular doctor to discuss the swelling in the extremities and see if I can get any answer to that. Then I have to make the decision if I want to go to the endocrinologist and go further to…

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Self love day 3- NICE to meet you…

Self love day 3- NICE to meet you…

When I was in my college years, I interviewed for this summer job selling knock off perfumes. In the interview the question was asked on a scale from 1 to 10, how would you rate yourself? Without hesitation I said, an 8. The follow up question, of course, was why? My simple answer was because I’m nice. To this day that answer is still true. I’m just a nice person at the core. Of course I have my moments like…

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Overcoming Multiple Sclerosis – OMS

Overcoming Multiple Sclerosis – OMS

I need to thank Jen from Tripping through Treacle’s http://trippingthroughtreacle.com/ Who reminded me of this. If you haven’t followed my blog, for almost a year I became vegan. I did it for health reasons. I wanted to see if it made any difference in my multiple sclerosis. The real reason I ended up stopping is because for some reason I started putting on weight. I ended up joining weight watchers and at the time being vegan was very difficult to…

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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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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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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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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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Second Ocrevus infusion

Second Ocrevus infusion

Leaving behind all the BS that got me to the second infusion, let me finally talk about the infusion itself. Unfortunately it wasn’t the full dose of 600 mg. This specialty pharmacy ordered 300 mg so in two weeks I’ll be back again to take the other half. This is the way you would start Ocrevus. The second infusion was supposed to be a full dose. However, the infusion is basically the same. After they find a good vein for…

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Update Ocrevus infusion started

Update Ocrevus infusion started

Some how, someway, we are on the way. IV line in but still waiting on medicine. Happy to say my veins cooperated on the second try. Now the pharmacy called that they only had 300mg of the Ocrevus when the orders clearly say 600mg. Now they are calling my doctor for clarification. Where the other 300mg is coming from, I don’t know. I will continue to add to this post. So I once again am doing a half dose of…

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