Multiple Sclerosis

MS constipation blues? See 12+ treatment options

Feeling “irregular” on the regular? Constipation is a common issue for people living with multiple sclerosis (MS), affecting as many as 40% of patients. Over 15,000 MS members on PatientsLikeMe report experiencing bowel problems and of those, about 47% have reported it as “moderate” or “severe” – take a look here. With help from our team of in-house health professionals, we took a closer look at this taboo topic, as well as available treatments. What’s going on with constipation? Typically, constipation is defined as having fewer than three bowel movements a week. But only you know what’s “regular” for you — constipation isn’t just about bowel movement frequency and averages. It can also mean going #2 less often than what’s normal for you – or having stools that are hard, dry or difficult to pass. Other symptoms that can come with constipation include incomplete evacuation of stool, abdominal bloating, cramping and straining. When constipation becomes chronic or interferes with your daily life, it may be time to seek treatment. What’s the constipation/MS connection? MS and some medications used to treat it may cause constipation. MS damages the nerve cells of the intestines and can slow down and impair the muscles that usually push food …

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walking devices

Staying mobile with assistive walking devices: Member Cathy weighs in

Do you have difficulty walking or getting around? Have you considered using a wheelchair, walker or cane? Making the decision to use a walking or mobility aid can be difficult. You’re not alone. Here, PatientsLikeMe member Cathy living with multiple sclerosis shares about how she overcame the fear of losing her independence and how using a cane is helping her “live the kind of life we all deserve.” When you’re first diagnosed with multiple sclerosis, it’s typical to have questions and concerns that are overwhelming and cause great anxiety. In the age of “fake news,” this anxiety increases when we’re bombarded with television programs that characterize disability as a downward slide. It doesn’t have to be this way. A positive attitude and a bit of determination can help us live the kind of life we all deserve. One of the greatest fears for many after being diagnosed is if MS will progress to the point of losing our independence. After enjoying a life of self-reliance, the thought of depending on assistive walking devices such as canes, walkers, scooters or wheelchairs is frightening. I was twenty-eight years old when I was diagnosed. My legs and hands were weak and numb, and my balance was …

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Health news: What’s making headlines in June

In case you missed it, check out this round up of some of the stories making headlines in June…   Parkinson’s disease: Apple Watch will now be able to monitor PD: Tech developers announced this month that the Apple Watch will now be able to track two common PD symptoms — tremors and dyskinesia — and map them out in graphs to help doctors (and patients) with PD monitoring. Fill me in. Study points to an “overlooked driver” of PD — Bacteriophages: What are bacteriophages or “phages”? Viruses that infect bacteria. New research shows that people with PD may have an overabundance of phages that kill “good” bacteria in the microbiome or gut, which could mean a new target for treating PD. More on the study. Lupus: How common are cognitive issues with lupus? Very. A doctor specializing in lupus research says nearly 40% of people with SLE have some level of cognitive impairment, such as trouble with attention, recall and concentration — so doctors should monitor it early and often. Read his Q&A. Lung cancer: Drug may replace chemo as initial treatment for many with NSCLC: New clinical trial results of the immunotherapy drug Keytruda show that it can be a more effective first treatment than chemotherapy for …

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How to prepare for a doctor’s appointment: 7 tips from member Cathy

Ever feel confused or overwhelmed after a doctor’s appointment? Forget to ask important questions or bring up new symptoms? Covering all of your concerns in a 30-minute appointment can be tricky. MS community member Cathy can relate — read on to see how she’s learned to make the most of her appointments and check out her 7 tips for getting the answers she needs. In 1986 I noticed something was awry when my legs were completely numb, my arms were weak, and I was always physically exhausted. I felt scared, isolated and confused. I scheduled an appointment with my internist who referred me to a neurologist. After a spinal tap and CT scan the tests were conclusive. I had multiple sclerosis. I was happy to have a name for what I had but that didn’t diminish my confusion. I decided my neurologist would lighten my emotional load at my next appointment and, like Scarlett O’Hara, I’d think about it all another day. In hindsight I realize this was not a good plan. Learning how to self-advocate One of the most important lessons I learned over the last three decades is you must always advocate for your health instead of letting others …

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Probiotics for MS? The latest research

Wondering if a probiotic could help treat your MS? With 10 forum threads on the topic, you’re not the only one. From conflicting information online to recommendations from friends and new research making headlines, separating fact from fiction can be tricky. Here’s a recap of the latest research on probiotics and MS from our in-house team of health professionals. Let’s start with the basics: What are probiotics? Probiotics are live microorganisms (usually bacteria or yeast) that may be able to help prevent and treat some illnesses and encourage a healthy digestive tract and immune system. They’re often referred to as “gut-friendly” bacteria. Where can you get them? Probiotics are often in supplements or foods (like yogurt, kefir, kimchi, tempeh, etc.) that are prepared by bacterial fermentation. A couple probiotic bacteria that have been shown to have health benefits include: Lactobacillus and Bifidobacterium. Within those groups are many different species and strains. Many probiotic supplements (broad-spectrum or multi-probiotics) combine different species together in the same supplement. Gut flora (microbiota) consists of hundreds of different types of microorganisms. Probiotics may help improve the way your gut flora performs. Probiotics can benefit both men and women equally, so it is definitely worthwhile trying them. Why is gut health important for MS? Your …

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Health news: What’s making headlines this month

Let’s stay on top of the latest health news — in case you missed it, check out this round up of some of the stories making headlines in May. ALS May is ALS awareness month: Later this month, advocates from across the U.S. will head to Capitol Hill to meet with their legislators. Check out how you can get involved and join the fight against ALS. Congress passes $3 billion increase in NIH funding: $140 million of the increase will go to the BRAIN Initiative research projects that contribute to the knowledge and understanding of ALS. More info. Lupus May is Lupus Awareness Month: Nearly two-thirds of people know little or nothing about lupus beyond the name, according to the Lupus Foundation of America, which is promoting the “Go Purple” campaign. Get ideas for boosting awareness. A link between the “mono” virus and lupus? A new study published in Nature Genetics shows that the Epstein-Barr virus (EBV) — known for causing mononucleosis — may increase the risk of lupus and six other autoimmune diseases by changing how some genes are expressed. Check it out. Parkinson’s Disease “Suspect” Parkinson’s drug faces scrutiny: Following reports of hundreds of deaths and adverse events, the FDA is re-examining the safety of Nuplazid (pimavanserin), which …

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Managing MS fatigue & guilt

Ever feel guilty about how your MS symptoms impact your life or the people around you? Like you can’t “pull your weight” or that people don’t understand that needing to rest is a real symptom and not laziness? The PatientsLikeMe community can relate — there are nearly 26,000 members with MS reporting fatigue as a symptom, and over 800 forum threads on fatigue and guilt. Here’s what some members are sharing about their fatigue guilt: Missing out on family time “I slept all afternoon and missed a beautiful afternoon with my wife and daughter. To make it up to my wife when I woke up I decided to tackle the kitchen and the laundry. I managed the kitchen but had to give up halfway into the laundry. I hate missing time with my family and not pulling my weight.” Worrying about the future “…my issues come when I feel guilt about the future, I worry about my kids having to take care of a sick mother…” Breaking plans “When I feel the most guilty is when I’m having a good day and I promise to do something for someone, and the day comes and I can’t do it cause I’m too tired or my body …

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Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”

Elizabeth is a member of the 2018 Team of Advisors living with MS and a self-described research addict. Here’s what she had to say about her experience contributing to research and why “it’s powerful to use a devastating diagnosis for good.” I’ve always been a sucker for a focus group. Give me some free pizza and I’ll tell you everything you want to know about your product, service or ad campaign. In fact, I got into advertising as a career because I liked the research part of it so much. So, when I was diagnosed with multiple sclerosis, I applied that same mindset to my disease approach. The first MS research study I did came a few months after my doctor prescribed Avonex. For someone with a virulent needle phobia, a weekly intramuscular shot sounded almost worse than having MS. So I spent the next few months imagining myself on a beach—right before I tried in vain to push an inch-and-a-half needle into my leg. The meditation didn’t quite take, but my passion for research didn’t waiver (thank goodness for a husband who didn’t mind giving shots and, later, the Avonex quick inject pen!) Next came the EPIC Study — …

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The lowdown on generic MS medications

From FDA approvals to availability and safety, generic drugs are a popular topic in the PatientsLikeMe MS forum (more than 15 threads!). To help you stay in the loop about what generics are and what’s out there for MS, we checked in with our team of in-house health professionals. Here’s the scoop… Let’s start with the basics: What are generic drugs? According to the FDA, “a generic drug is a medication created to be the same as an existing approved brand-name drug in dosage form, safety, strength, route of administration, quality, and performance characteristics.” So what sets the brand-name versions apart? Generic and brand-name medications work the same way and provide the same clinical benefit. Generic medications have the same active ingredients as brand-name medications, but generics only become available after the patent expires on a first-of-its-kind (brand name) drug. Coming soon: Ampyra (dalfampridine), the only FDA-approved drug indicated to improve walking in adults with MS, is anticipated to have generic versions available sometime in summer 2018. Currently available MS generic drugs: Glatopa: Glatopa 40 mg/mL is an FDA-approved generic version of Copaxone 40 mg/mL for patients with relapsing forms of MS. Glatopa has been determined by the FDA to be therapeutically equivalent …

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MS research: What’s the latest?

Keeping tabs on the latest MS research isn’t always easy. So, our team of in-house health professionals took a closer look into some of the treatments in the research pipeline for people living with MS. Most of these treatments are in the final phase of clinical development — phase III clinical trials. In this phase, researchers compare the safety and effectiveness of the new treatment against the current standard treatment. Check out the roundup: Ozanimod – An oral treatment in phase III clinical trials with the potential to reduce relapses and prevent neurological damage. Ozanimod is reported to work like Gilenya (fingolimod) but with some potential for fewer side effects. A new drug application for ozanimod was submitted to the FDA in December 2017. This application is seeking approval for the use of this agent to treat relapsing multiple sclerosis. It is possible that an FDA decision could be made on this application in the second half of 2018. Ponesimod – An oral treatment in phase III clinical trials that prevents immune cells from damaging myelin that insulates nerve-cells in patients with MS. A new drug application for Ponesimod is possible within the next couple of years. Siponimod – Similar to Ozanimod, Siponimod is an oral treatment in phase III …

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