multiple sclerosis

Conditions Commonly Mistaken for Multiple Sclerosis

Have you wondered why your vision got so blurry, or why you feel tired all the time? Maybe you’re having trouble remembering things, and your mind isn’t as sharp as it used to be. These symptoms can be scary, and it can be frustrating when there are no clear answers about what they may be. Your symptoms could be multiple sclerosis (MS), but they could be something else. One study found that nearly 1 in 5 people with other neurological conditions are mistakenly diagnosed with MS. Because there is no single diagnostic test to receive a definitive MS diagnosis and because symptoms often mimic other illnesses, it can take years to get a final diagnosis. What is multiple sclerosis? Multiple sclerosis (MS) is a disease that affects the central nervous system, which is made up of the brain and spinal cord. With MS, the body’s immune system attacks the protective layer, called myelin, that forms around nerve fibers. When the myelin sheath is damaged or destroyed, it disrupts the flow of information from the brain to other parts of the body. The scarring left behind from inflammation to the myelin sheath is called sclerosis. There are four main types of …

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How to Ask for Help

Everyone needs it, but sometimes the hardest thing to do is to ask for help. Opening yourself up to feeling vulnerable, especially when you are already feeling compromised by your condition, can be challenging. It is important to remember; you do not have to shoulder it alone. Your chronic health condition may force your hand in making some adjustments to your everyday life, not only for you but those around you. Depending on where you are on your health journey, you may need to think about asking your loved ones for a bit more support. It can be hard to admit that your condition is taking away yet another piece of who you used to be, but reaching out for help is necessary for managing your stress and comfort levels. You don’t have to feel ashamed for needing a helping hand (or two!) The National Alliance on Mental Illness reminds us that there is no right or wrong way to ask for help, but if you are looking for some motivation for starting these kinds of conversations, try these tips our members have recommended: Be clear and specific about where you need help or support When you ask for help, …

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Chronic Kidney Disease Woman and Cat

Lessons Learned on a Seventeen Year Journey to Diagnosis

Meet Trisha (@DXMS06) Before Trisha Bordelon, a 69-year-old PatientsLikeMe (PLM) user from Springfield, Missouri, officially received any diagnosis, she was guilty of what many of us in her shoes would do – spend hours going down a rabbit hole of internet searches to try and figure out what was going on with her health. She had it in the back of her mind that her symptoms were aligning with Multiple Sclerosis (MS). However, even after seeing multiple doctors, her diagnosis was still unclear, and Trisha became more and more frustrated. One of the first symptoms she remembers was constantly losing her balance and bumping into the walls in her home. While her doctor was blaming this on the steroids she was taking, the symptoms continued even once she stopped taking the medication. It really never occurred to Trisha that something was really wrong with her until she experienced optic neuritis – twice. She was finally referred to a neurologist for scans. Still, she was frustrated she had no answers and was trying to figure out what was going on with her body. From what started with her first symptom in 1989, she experienced a double vision attack when driving to …

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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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Putting together an MS emergency bag: What’s on your must-have list?

From managing incontinence to temperature changes and sudden muscle weakness, many people living with MS have items they can’t live without. Some PatientsLikeMe members have started carrying an emergency bag with all the essentials to deal with inconvenient MS curveballs. Check out their suggestions: Instant ice packs Mint gum (helps one member “cool down”) Change of clothes/underwear Wet wipes Latex gloves Hand sanitizer Travel-sized air freshener Towel and water resistant blanket Disposable incontinence products i.e. Pads, Panty Liners or Pull Up Pants Foldable/packable shoes Wet bags (like the ones meant for baby diapers) Travel sized detergent/bleach Fold-up emergency cane (like this one) Advil/Tylenol or a dose of your prescribed muscle relaxer If you had an MS emergency bag, what would be inside? Share this post on Twitter and help spread the word.

Shout out to The Golden Girls: Shows and movies that “get” chronic illness

‘Tis the season for binge-watching — but the media often flops in its portrayal of people with health conditions. So we’ve gathered patient perspectives on Hollywood depictions of illness and who’s gotten it right (thanks, Bea Arthur). When doctors doubted Dorothy A writer for The Mighty who has multiple health condition recently praised The Golden Girls for it’s portrayal of main character Dorothy navigating the healthcare system with a chronic condition. Over the course of a two-part episode (called “Sick and Tired”), Dorothy (played by Bea Arthur) starts feeling constant exhaustion and hops around to different doctors who don’t believe she has a real ailment. “Maybe I am crazy — nobody believes me,” Dorothy laments to Rose (Betty White) after multiple appointments. “Dorothy, you are not crazy, honey, you’re sick,” Rose replies. (Thank you for being a friend, Rose.) Ultimately, Dorothy is relieved when a specialist finally diagnoses her with chronic fatigue syndrome (CFS). The show was ahead of it’s time in building credibility around CFS, which is just now gaining recognition as a serious longterm condition that shares many characteristics with some autoimmune conditions. Golden Girls creator Susan Harris based the episodes on her own experiences with CFS and doctors who didn’t understand the condition in the 1980s. Other shows …

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Creating communities, on and off PatientsLikeMe

More than half a million members, connecting 365 days a year, sharing countless health insights and words of support. Communities like this one are built on communication. And every day, patients like you are finding new ways to connect and enrich your community. From in-person meet-ups to live-streaming support groups and off topic threads, patients like you are finding creative ways to build communities. Check out some of the ways connections are growing in and out of the forum. Taking it offline What started as a simple chat between friends in the forum evolved into something much bigger. Members from the multiple myeloma community on PatientsLikeMe decided to take their friendship out of the forums and into real life. Marcia (marcia_holman), Dennis (DennisIvan), Paul (paulatsea) and Lee (Dapylil), along with spouses and grandchildren, got together and discussed life with multiple myeloma, their “new normal” and shared the highs and lows of the journey together. In Marcia’s words: “It has been a delight to get together and meet someone you have just been corresponding with on line. We can put a face to them. You get to know their personalities and they become “forever friends!” Check out the full story.   Connecting …

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Breaking the silence on incontinence

A guest blog by member Shannon   MS gives me a lot to write about, which is a wonderful coping mechanism when certain aspects of the disease are difficult to talk about. Initially, I wrote about stress and the heavy toll it’s played in my life, and on my body, in the last month. But, as often happens with this disease, I was interrupted. My body said unexpectedly, “No, this is the way we’re gonna do things.” And just as suddenly, my writing inspiration is changed, because although my temporary season of severe stress was very real and terrible, there is a part of this disease I must expose for the sake of anyone who may suffer in the way I do. Possibly, I’ve waited years too many to share. I’ve written multiple accounts to describe my suffering which have never been read; kept private to spare myself additional pain and embarrassment. I tucked them away, in the same way I attempt to shamefully tuck away this symptom and pretend it isn’t there. Until the next time. I received an email recently from PatientsLikeMe which prompted me to share the details of likely, the most humiliating part of MS. Incontinence. The word itself …

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