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 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…
I’d like to pretend this isn’t really happening. It’s much easier to live in ignorance. However, I’ve been noticing this symptom coming up more often than I’d like to see it. When I’m having dinner and it can be fish, beans, or rice, Sometimes the food doesn’t get all the way down my throat when I swallow. I almost have to drink a little water to push it down. It’s just almost feels like the food builds up and it’s…
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…
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…
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…
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…
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….
This is a lot of copy and paste of words we hear as patients with multiple sclerosis. I got this off of ms lifelines seen here http://www.mslifelines.com/ms-terms I wanted to create a quick reference place for some of those terms we hear not only for me, because I forget, but for anyone else who needs it. This is a selected list off of http://www.mslifelines.com/ms-terms ms lifelines. Ataxia Lack of coordination and unsteadiness that result from the brain’s failure to regulate the body’s posture and…
We’ve had a turbulent relationship over the last 19 years to say it mildly. There have been many one-sided fights. I’ve told my story before bug sometimes it’s worth repeating. My first MS attack (exacerbation) was sever. The entire left side of my body went numb and atrophied. I couldn’t walk, hold anything or feel on the left side. It came on fast starting in my foot on a Saturday and by the time I saw the doctor that Friday…
