living with MS

I’ve been away for about a week, the first break of that length that I’ve had from writing about MS in about two years. Much of that time was spent on a trip from Long Island, New York, to Newport, Rhode Island, aboard the Mariner. Marine chart of…

Multiple sclerosis (MS) consists of more than lesions; it also comprises silent inflammation. Lesions seem to get all the attention, as they are photographed and flashy, and the main topic in MS circles. But silent inflammation is what is running the havoc behind the scenes. The MS Society…

Hair Loss Seen in RRMS Patients Using Aubagio Often Temporary and Mild, Study Says I read a lot of questions on multiple sclerosis (MS) social media groups from people who are worried about hair loss caused by their disease-modifying therapy (DMT). Aubagio (teriflunomide) is one DMT with…

I’ve been thinking a lot about privilege in recent months — what it enables as well as what it prevents. Those who benefit from it may not be aware of their position, and when their privilege is pointed out, they have a hard truth to face. Many refuse to…

Well, this is going to be a niche market: A picture of a toilet should grab the attention of any plumber who’s now got MS and reads Multiple Sclerosis News Today. Victories need to be celebrated no matter how small the Venn diagram is! The toilet looks OK.

I knew it was going to be one of those days as soon as I opened my eyes. I woke in some sort of half-start, my eyelids popping abruptly open as I looked up at the ceiling. Something seemed…

Have you ever asked yourself, “What am I supposed to do with my life?” or, “How did I get here?” I have asked these questions several times throughout my existence. Those questions regurgitated at the occurrence of every life-altering event. I did not receive a definitive answer that appeased…

  Living with multiple sclerosis (MS) could be compared to having an annoying house guest who never leaves. You can tolerate them at first, but soon your nerves and resilience wear thin. You try to accept and adapt to the house guest, but you never give up on trying to…

Most weeks with MS are downbeat. That’s hardly a way to capture a reader’s attention — all of us struggle. What we need is light to blow away the shade. Last night as I climbed the stairs to bed, my legs gave out with three stairs to go. Luckily,…

As I pulled into the overcrowded Trader Joe’s parking lot, I was grateful to see an open handicapped space. Once parked, I turned off the car engine and paused; the heat was oppressive. Ten days post-chemo/Solu-Medrol (methylprednisolone) and my fatigue was as thick as the stagnant humidity. I…

Loss of health-related quality of life is caused mostly by balance problems, muscle stiffness, and depression in people with relapsing-remitting multiple sclerosis (RRMS), and for those with progressive MS, the causes are muscle rigidity, paralysis, weakness, and pain, according to a…

Last week, I wrote about climbing through grief. This week, I will focus on what I learned in the throes of the cycle of grief. Several people share the opinion that I do too much. My cousin often says that he wants me to say no to…

Leaving a restaurant the other evening, I was stepping off an unusually high curb. Right cane down, left cane down, swing the right leg, swing the left leg, and … uh-oh. Down I go. I’d been asking for it. I’d needed to change the electrodes on the Bioness…

Oral DMTs Still Common 1st Therapy for New MS Patients but Ocrevus Having Impact, Market Report Says Deciding on what therapy to use is a tough decision for people with MS and their doctors. That’s especially true for someone who is newly diagnosed. Do you go with…

Maybe it’s because I’ve been listening to too much Jackson Browne lately, but I’m distressed by the state of the world these days. And it’s not the big-ticket stuff like politics or social dysfunction that’s got me worried, either (though both take turns keeping me up nights). It’s…

The queue to get into Canterbury Cathedral in bright sunshine seems endless. The quandary of being Dracula strikes me — I’ll either fry in the sun or fry in a church set up during the Roman occupation of Britain! Luckily my condition is MS, so we seek solace…

In mid-July, the woman who writes the Multiple ExperienceS blog had a little fall. As Jamie explains, her rollator went forward, but her feet didn’t. The fall left a small cut on her knee. Over the next few days, Jamie’s knee swelled, and a trip to her doctor,…

It has been a while since I’ve written a column. Within one month, two of my relatives have passed away. Spiritually, I believe in eternal life. However, in my earthly existence, death has left its sting. Multiple deaths, physical pain, and disappointments have catapulted me into a cycle of…

Brain Iron Levels Correlate with MS Progression, Disability Risk, Study Shows Currently, doctors measure shrinkage in the brain as a way to predict physical and cognitive decline in people with multiple sclerosis (MS). But it takes a long time to see this brain atrophy on a standard…

People with multiple sclerosis are 48 percent more likely to have high blood pressure compared to the general population — and to people with other demyelinating diseases, a new study reports. Its researchers also emphasize that hypertension is already linked to poorer outcomes in MS patients. The study, “Cardiovascular…

Phew, what a scorcher. The summer of 1976 was the last time it was this hot in the United Kingdom. My lasting memory of that summer was not lazing on a beach, but sweltering as a relief manager in an “off-licence,” which is a liquor store. I probably sold…

Treatment with Tysabri (natalizumab) can help lessen sexual dysfunction in patients with multiple sclerosis (MS), a new study shows. The study, “Patient perceived changes in sexual dysfunction after initiation of natalizumab for multiple sclerosis,” was published in the Multiple Sclerosis Journal – Experimental, Translational and Clinical. MS is…

I am a self-described homebody. I enjoy social gatherings and getting out, but I always look forward to coming home. Within five minutes of pulling into the garage, I am in sweats and a T-shirt. My demeanor immediately softens. Home is familiar, and in familiarity I find safety. Sometimes, safety…

I’m now three months past my second round of Lemtrada treatments, so it’s time for an update. I began Lemtrada (alemtuzumab) in December 2016, hoping it will be the last disease-modifying therapy that I’ll ever need to use. I’ve had peaks and valleys since this treatment began, thus…

An association between high blood pressure and reduction of brain integrity in multiple sclerosis (MS) patients highlights the importance of blood pressure management by MS healthcare providers. The severity of MS varies greatly. Although this is still poorly understood, certain factors, such as obesity and high blood pressure, are suspected…

Cladridine may be effective in preventing disability progression and reducing damage to nerve cells in people with progressive forms of multiple sclerosis (MS), researchers suggest based on a case study of two such patients given the injectable treatment. MS is characterized by progressive degeneration of cells in the central nervous system, mostly…

I am told I have primary progressive multiple sclerosis (PPMS), and my symptoms appear to be in line with that diagnosis. I continually have a slow gait, leg weakness, balance issues, and fatigue. There is never a break from those symptoms. Intermittently, I have cognitive issues, slurred speech, and burning…

Missouri Trial to Examine if Fasting Alters Gut Microbiome and Immune System of RRMS Patients in Helpful Ways The impact of various diets on multiple sclerosis (MS) has been studied, but this new study will look into whether fasting has an impact. The researchers at Washington University…

Health professionals are often not discussing the importance of following national dietary guidelines with their multiple sclerosis (MS) patients, causing them to turn to other sources like the internet that may advise potentially harmful diets with serious consequences, according to an Australian study. The study, “Dietary responses to…

I turned 40 this year, and it seemed like a mighty fine time to stop and take stock. After all, I’m at the midway point, and if I want the second half of my life to be as fun and productive as the first, I have to make…