living with MS

Many multiple sclerosis (MS) patients have a reduced sense of smell, and the more relapses they have, the worse the problem, according to a study suggesting that smell may be a marker for the disease’s progression. Findings also suggested a connection between reduced sense of taste and MS progression. The…

One of my sisters called to let me know that CNN was doing live coverage of the Women’s March that was taking place in all 50 U.S. states, as well as many other countries. While we talked, one of the speakers came on and observed that the issues facing…

This is second in a 2-part series. You can find Part 1 here.  Being proactive about your MS means staying up-to-date on current theories, treatments, products, and strategies. It’s safe to say that most people will turn to the internet at least a few times to look up…

There’s a new kid in town by the name of LiveWiseMS. Partnering with the International Organization of MS Nurses (IOMSN), LiveWiseMS has already become a trusted resource for patients and care partners looking for answers about MS. The website’s mission is…

Oral multiple sclerosis meds appear, more and more, to be the first choice of patients who are just beginning to receive an MS treatment. A recent report by the independent marketing research firm Spherix Global Insights shows that oral disease-modifying therapies captured a significantly higher…

Have you ever had someone tell you “it could be worse?” They are making a valiant effort to comfort and console you. However, there is not much consolation in the words. They almost sound a bit insensitive. I have been told this several times. I think many people…

Here’s my Pick of the Week’s News as published by Multiple Sclerosis News Today. MS Patients with Spasticity Needed for Study of Extended-release Baclofen Capsules Now here’s a rare chance to get involved in a clinical trial – as long as you have MS and experience some form…

There’s one thing you need to know about my family — we’re weird. We laugh at inopportune times. We can go entire days just speaking to one another in movie quotes. Sarcasm is a love language to my clan. And we can make just about anything — and I…

Want to know what living with MS feels like? Take a ride on this bike. Those of us who have MS know that our disease has lots of symptoms. There are the legs that feel like they have 20-pound weights on them … balance that can have you…

After my recent insurance experience, which I share here, I never again will wonder why some people give up on claiming their medical benefits. I have received Botox treatment for spasticity of my quad and hamstring muscles. This is an FDA-approved use, but to get this treatment there has…

Nominations are being sought for individuals and groups for the U.K.’s MS Society Awards 2017. Organizers say the awards will recognize the stars of the MS community and their contributions during 2016. While not wishing to denigrate…

In August I sold my home of 18 years and downsized to a small one-bedroom rental “in town.” For weeks I tripped over boxes, packing paper, out-of-place furniture, the dog, the cat, the dog chasing the cat, size 11 tennis shoes and dirty socks. I shared my efforts to…

Serving as co-administrator for a large MS forum has shown me that, while we live in a world of easy access to information, we may not always be prepared to understand and interpret it. While I’m not a medical doctor, I do work in the healthcare field and have…

Resilience, the ability of a person to cope with change and solve problems, is associated with satisfaction with social roles and quality of life in patients with multiple sclerosis (MS) and other chronic diseases. However, it is not linked to a patient’s physical function, according to the results of a…

Most Irish general practitioners (GPs) are against decriminalizing cannabis use, but many, especially those over age 50, say it can be useful for treating multiple sclerosis (MS) and other medical conditions, according to a recent survey. The results are detailed in the study, “Irish general practitioner attitudes toward decriminalisation…

Here’s my Pick of the Week’s News as published by Multiple Sclerosis News Today. Sanofi, ImmuNext Partner to Develop Antibody to Treat Range of Autoimmune Diseases Big news on the business front is the alliance of two companies, Sanofi and ImmuNext, that have announced an agreement…

It’s often said of the 2.5 million of people in the world who have multiple sclerosis that no two have the same symptoms. Indeed, that is why it is known as the Snowflake disease. And the wide variety of symptoms can be well-illustrated by looking…

Would you open your bank account and write a blank check to just anyone requesting something of value from you? Of course not. So, why would we do that with our healthcare information? I was recently sent an informed consent form from the MS clinic where I am treated,…

At the time of my MS diagnosis I was a full-time graduate student with plans to obtain a joint Masters of Public Administration/Juris Doctor degree. After six years as a stay-at-home mom and military spouse, I was anxious to complete this next stage of my education and return to…

  When thinking about multiple sclerosis (MS), it’s important to remember there are four distinct types of the disease. Most of you well know this, so I’ll just mention them here: relapsing-remitting MS (RRMS); secondary progressive MS; primary progressive MS, and clinically isolated syndrome. (Anyone needing or wishing more information…

It’s been a month since I completed my first round of Lemtrada infusions, so it’s time to bring everyone up to date on how things are going. I was told to expect a roller coaster of side effects. I’m pleased to say that, at least so far, it’s…

Here’s my Pick of the Week’s News, as published by Multiple Sclerosis News Today. Inactivity and Poor Diet Are Common Risk Factors Among MS Patients, Study Says For years, people with MS have been advised to exercise more and eat healthy foods. That is advice given to…

The European Commission is awarding 15 million euros to support MultipleMS, a large global project designed to develop new personalized medicine approaches for multiple sclerosis (MS) patients. The funds, equal to about $15.2 million, will be provided through the agency’s Horizon2020 Framework Programme for Research and Innovation. The program, the European Union’s largest research…

An MS patient who reads my column sent a personal message last week. It began: “Sorry about the secrecy. I’m in the closet! Seriously, I haven’t told many people about my RRMS diagnosis, for many reasons. I really don’t want my kids knowing. … I want to spare them that…

Now that 2016 is thankfully behind us, it’s time to start a new year — fresh, rested, and ready to kick butt and chew bubble gum. That being said, rest in peace David Bowie, Alan Rickman, Glen Frey, Prince, Nancy Reagan, George Kennedy, Gary Shandling, Anton Yelchin, Gene…

I’m already tired of hearing about New Year’s resolutions. If you’re like me, you find that for those who spend their social media time listing goals in earnest, there’s a smidgen of luxury to their actions. After all, most of these goal-making champions are not chronically ill. They don’t have to think…

Phoebe Scopes was the first international patient to receive Hematopoietic Stem Cell Transplantation (HSCT) therapy for multiple sclerosis in Moscow. In this fourth, and last, part of her story, we join Phoebe on her return home to the London. Ian: What is your post-HSCT MS state from getting home…

Cookies and veggie tray in tow, and trepidation in check, I ventured to a New Year’s Eve party at a friend’s house. Since my diagnosis of MS, New Year’s Eve has been celebrated at home with Dick Clark, and then Ryan Seacrest, to keep me company. In Winter…

Healthcare providers frequently assess multiple sclerosis (MS) patients for the development of other health conditions, such as depression, anxiety, pain and sleep disturbance, according to results of a survey-study. The study also includes information about how health professionals treat and counsel MS patients diagnosed with these conditions. The study, “…

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.