living with MS

Loss of hearing symptoms such as tinnitus are not usually attributed to multiple sclerosis, but for those with MS who do experience tinnitus, like me, they can be very annoying. The American Tinnitus Association (ATA) describes the symptoms as: “the perception of sound when no actual external noise is present.

A number of important discoveries, therapeutic developments, and events related to multiple sclerosis (MS) were reported daily by Multiple Sclerosis News Today throughout 2016. Now that the year is over, it is time to briefly review the articles that appealed most to our readers. Here are the top 10 most-read articles of 2016, with…

2017 has arrived. Welcome to a new year! First, I would like to say thanks for allowing me the opportunity to share my MS journey with you. Your comments, emails and words of encouragement are appreciated. 2016 was an eventful year, indeed. I have learned much about the disease…

Lack of physical activity and a poor diet may be the most common risk factors for poor health and survival in patients with multiple sclerosis (MS), according to a study. The research, “Individual And Co-Occurring SNAP Risk Factors,” was published in the International Journal of MS Care. The development…

  Several months ago I wrote a blog on my personal website about Ocrevus (ocrelizumab), the first drug that’s designed specifically to treat primary progressive, as well as remitting, multiple sclerosis. The clinical trials for Ocrevus posted excellent results. The buzz in the medical community was good,  and it was…

We all know the credit card commercial with actor Samuel L. Jackson talking about the buying power and the return on a certain credit card. He speaks about the bonus cash-back offers you can accrue if you just keep spending money and putting it on your credit card. The tag…

President Obama’s signing of the 21st Century Cures Act on Dec. 13 is expected to bring real change to those living with multiple sclerosis (MS). The legislation will lead to better research and clinical trials. It also puts increased weight on the role patients play in developing treatments for their…

The glory days of multitasking may be fading. More and more research points to the fact that our brains actually cannot multitask. Rather, the brain shifts rapidly (it’s all relative) back and forth between tasks as we attempt to do multiple activities at once. Like many people with MS,…

When I was a child my teeth had a lot of cavities So, I had lots of fillings in my mouth. The fillings were silver amalgam, which contain about 50% mercury. Mercury is a pretty toxic metal. In fact, these days if you break a thermometer and its mercury spills…

Nine months ago I started the high dose biotin protocol. I did so in an effort to slow the progression of my primary progressive multiple sclerosis. This is the link for my first article in August detailing the high dose biotin protocol and my results at that time.

I don’t want to write about Andrew Barclay. But I have to. Because Andrew Barclay could be you or me. Barclay died in early December. He was a former civil servant in the U.K. and a grandfather. He turned 65 on his last birthday. And, Andrew Barclay had multiple…

The U.S. Food and Drug Administration (FDA) has accepted Bayer’s filing of a supplemental biologics license application (sBLA) for two products designed to improve the lives of people with multiple sclerosis (MS): myBETAapp and the BETACONNECT Navigator. Bayer created the BETACONNECT system to increase patient treatment compliance and improve…

Last week, I introduced you to Phoebe Scopes, the very first MS patient from another country to undergo hematopoietic stem cell transplantation (HSCT) in Moscow. Today, in Part 2,  we pick up the story of the 46-year-old who lives in London. Ian: So, you had done lots of research. How…

I’ve been mulling over what to write for my initial post for Multiple Sclerosis News Today. I want to make a splash, to keep you interested and let you know who I am and why I’m here. As Rogers and Hammerstein wrote in The Sound…

I’ll admit I was nervous as I sat in the infusion chair for Day 1 of Round 1 of my Lemtrada (alemtuzumab) infusions. I’d read a lot, and talked with my neurologist a lot, about the drug. I knew the benefits of Lemtrada could be great. My multiple sclerosis…

Here’s my Pick of the Week’s News, as published by Multiple Sclerosis News Today. Imbalances in Brain Microbiota May Be Behind Demyelination in MS, Study Says Good to see that new research involving humans (NOT mice this time) may lead to better understanding of MS. Alterations…

Have you ever wondered how your MS experience compares with others? Your ability to go out and do things? The therapies you’ve used? Your symptoms? Your age and ethnic background? Researchers from the Accelerated Cure Project for Multiple Sclerosis have been collecting this kind information for nearly two years…

I had the pleasure of being invited to speak and share my story at an event this week. Although I speak often, each encounter leaves me in awe. I am continuously reminded of the numbers of people with whom my story resonates. I also am cognizant of the lasting…

I make no secret that I believe MS nurse practitioners (NP) are the people who make the difference in an MS clinic. They are as knowledgeable as most neurologists when it comes to treating multiple sclerosis and usually can see their patients without the time constraints that doctors face.

Our daylight hours continue to get shorter, as we get closer and closer to the winter solstice. At 4:15 p.m. I close the curtains and blinds, uncomfortable sitting on display in my living room as I continue to work until 5:30 most evenings. It’s difficult to motivate myself to leave…

Here we go. This is the week my Lemtrada (alemtuzumab) infusions begin. A few weeks ago I wrote about how Lemtrada has been successful in stopping disease progression in folks with relapsing-remitting multiple sclerosis, and those who have transitioned to secondary progressive MS but continue to have relapses. There have…

Those of us with “invisible illnesses” are no strangers to this subject. Most of us have experienced situations in which we were judged, insulted and scorned based on people’s opinions and perceptions. We are told that we don’t look sick and we are placed in situations where we feel…

Keeping motivated is a daily struggle, and honestly, most days I just don’t feel like moving. I feel better once I do, of course, but the motivation to move and be productive is lacking. Here are a few tips that I find helpful to help keep me motivated and…

Here is my Pick of the Week’s news, as published in Multiple Sclerosis News Today. UV Light May Lead Way to New Treatment for MS and Inflammation Now this might be exciting, if turns out that ultraviolet light can truly be the basis of new treatments that…

In Cold Sassy Tree, the classic novel by Olive Ann Burns, Grandpa Blakeslee tells his grandson Will Tweedy that, “Livin’ is like pourin’ water out of a tumbler into a dang Coca-Cola bottle. If’n you skeered you cain’t do it.” If you don’t speak fluent hick, as I do,…

I’m 68 years old.  I’ve had multiple sclerosis since I was 32. I’m not sure where I expected this disease would take me when I was diagnosed 36 years ago, but I hoped that MS wouldn’t steal too much of my life from me.  I certainly never thought of…

Family Caregiver Month is observed each November, and it is estimated there are more than 90 million family members in the U.S. giving full-time care to people who have complex needs. In recognition of the work of the multiple sclerosis caregiver community, pharmaceutical company Genentech, a subsidiary of Roche,…

Several weeks ago I wrote about the benefits of time outdoors and my desire to learn to kayak properly, so  it can be an option when my legs won’t carry me into nature. I recently completed the final of three indoor kayak lessons. The course was actually called “Kayak Roll.”…

I love it when the sun is shining. I spend a lot of time outdoors in the summer, despite the impact of the heat on my multiple sclerosis. I love the warmth and the brightness. So, I lather up with sunscreen and I figure that, at least for me,…

Multiple sclerosis is so weird. Sometimes I just put up with a strange sensation or painful problem because I do not know how to describe it to the doctor without sounding crazy. I hope the problems will just go away, and sometimes they do. Maybe I am a little…