Did you ever watch the cartoon The Jetson’s? You know meet George Jetson ?,his boy Elroy, his daughter Judy, Jane his wife ?. They were the futuristic family that drove the cars that flew in the sky. It was their phone that I was thinking about lately. They would get a call and it was always on this monitor. You would see the person that they were talking to. I remember thinking this was such a cool thing. Granted I…
At the age of 49 I’ve lived almost half my life with the disease. It was the weekend of Valentine’s Day when I was moving into my new home that my left foot started to go numb. Within 4 days it was all the way up the entire side of my body. Within 6 days I was at a neurologist who was asking my mom and I if anyone in my family had MS. Having actually had optic neuritis about…
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…
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…
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…
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…
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….
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…
You can’t make this sh@t up. I get a call from the girl working on my infusion authorization, my insurance company wants to know the name, address and telephone number of my pharmacy where I am currently getting my prescriptions. The girl who called me really tried to be professional as possible but had the same reaction I had which was… WTF???? Will you be sending Ocrevus to my local CVS for me to pick up and take to NYC…
I’m a very big fan of Flipboard . I use it a lot, I post my blog, I read articles and I find recipes. I save all my recipes in a magazine, you could click on my recipe magazine right down the side of this blog. Yesterday I came across a great article about The Story of Multiple Sclerosis and It’s Major Milestones http://flip.it/udMksk. I just want to highlight the milestones. 1824 1st clinical description of multiple sclerosis 1868 Multiple sclerosis…
