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Unpredictable multiple sclerosis

Unpredictable multiple sclerosis

My neurology visit was uneventful yesterday for the most part. He did a quick exam and during the exam he said I always forget how myelopathic your MS has always been. He always says that to me. First I had a remember what myelopathic meant and then I remembered what he meant. Myelopathic is referring to the spinal cord. What my doctor means is that my MS is in my spinal cord not in my brain. All my symptoms fall…

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Neurologist was as expected

Neurologist was as expected

My doctor appointment went as expected. I will be continuing on Rituxan for the foreseeable future. There really is nothing on the market for me to change to at this point. The question about me getting worse, isn’t really a question, it’s more of a fact. That is what secondary progressive MS is, it’s steady decline or worsening of symptoms. That is what I have and they are really no drugs for that, at least for me. Mayzent Is on…

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So many needles

So many needles

I have to do bloodwork this morning. You think I’d be a lot less needle phobic with the amount of shots I’ve received over the years but I’m really not. I’ve from the earliest medicine for MS. I’ve been on Avonex, Betaseron, Rebif and even Copaxone. These are all medicines that required weekly or even daily shots that I had to learn to administer myself. For the first 12 years of my journey I had to do these. When Gilenya…

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Increased antidepressant prescription

Increased antidepressant prescription

Snap out of it!!! I was telling myself that for a week. I spent a week in pjs because I didn’t have the energy to get up and get dressed. I’ve been lethargic and tired and just morose. I was off of the steroids and knew it could be a side effect but it was bad. I saw the specialist that Tuesday and when we got to the list of my medication and Prozac she asked for the very first…

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Ocrevus infusion side effect gone better than past medicines I took

Ocrevus infusion side effect gone better than past medicines I took

Good morning. I’m happy to report I am finally feeling better. I actually started feeling a little better on Saturday. I went swimming and was able to still get around my condo without having that bone feeling fatigue. So it took about 6 days for me to start feeling better. By Sunday I was good. It was a tough week but I don’t have to worry about the infusion again until March. I can handle that. I remember when I…

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Ocrevus infusion a few months later

Ocrevus infusion a few months later

I’ve been asked this question quite a number of times so I thought I’d address this in my blog. I’m asked, do you feel any better since you’ve been on Ocrevus? Where I’d love to give a wonderful answer here, the answer is NO. however it’s also very important to answer, I also don’t feel worse. When I was on Tysabri, I was still feeling worse month to month. That’s why we made the switch originally to Rituxan, which is…

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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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Relapsing Remitting and Secondary Progressive MS, a combination of both

Relapsing Remitting and Secondary Progressive MS, a combination of both

It’s 20 years that I’ve dealt with my multiple sclerosis. When I first started doing research on my own illness, it was stated that most people go into the second stage of the disease after about 10 years. The second stage of the disease being secondary progressive MS. Most people start off in relapsing remitting and, at the time, it was said that 80 percent of people in this stage will go into secondary progressive around that 10 year mark….

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Multiple sclerosis changed my life many times

Multiple sclerosis changed my life many times

This blog was inspired by another MS blogger, who like me, has had this disease along time. Her positive spirit is always an inspiration. https://trippingthroughtreacle.com/2017/11/28/accept-adapt-succeed/ It wasn’t one time, it’s been many times. The first was the day I got my diagnosis. I didn’t understand what MS was. There wasn’t an internet yet I could search. I had to look it up in an old set of encyclopedias that were in my home. It had maybe two paragraphs in the…

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Disease Modifying Therapies in MS, do you take them?

Disease Modifying Therapies in MS, do you take them?

I received a comment yesterday, on an older blog, about my Ocrevus infusion. What I found interesting is she’s had multiple sclerosis for 36 years and she’s first going on a disease modifying therapy. First of all I have to say, 36 years within any DMT, that is amazing!!! I know other people like that or that have stopped taking any of the disease modifying therapy drugs for a variety of reasons. I never had that option. My multiple sclerosis…

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