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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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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Stem Cell Treatment For MS - Stem Cell For MS

Stem Cell Treatment For MS

Stem cell therapy is a popular topic in the MS forum and some members are already tracking and evaluating their experience. How does it work? Are there risks? To find answers to your stem cell therapy questions, we asked our team of in-house health professionals to take a look at the current research What are stem cells? Stem cells are different from other cell types because they can continuously replenish themselves. They have the ability to develop into any type of cell and act as an internal repair system in your body. Because stem cells have the potential to be a renewable source of replacement cells, researchers started investigating how they could be used to treat a variety of diseases. What is stem cell therapy? In stem cell therapy, a patient’s cells are replaced by new cells, either their own (autologous) or from someone else (allogeneic). The first step in this process involves growing stem cells in a lab and then transforming them into a specific cell type. These specialized cells are infused into the patient where they may multiply and help repair damaged tissues. However, more research is still needed to fully understand how to use these cells for regenerative or …

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MS & Vertigo: How do you cope?

Ever have a sudden loss of balance or feel like the room is spinning? You’re not alone —it’s a popular topic in the forum, and vertigo might be to blame. See what other members have shared about their experience with this symptom and how they cope. What’s vertigo? Vertigo is the feeling that you, or the space around you, is moving or spinning. It could be barely noticeable or so severe that you find it difficult to keep your balance and do everyday tasks. It can happen suddenly and last anywhere from a few seconds to much longer. With severe vertigo, your symptoms may be constant and last for several days, making normal life difficult. Vertigo-related symptoms may include: loss of balance nausea or vomiting dizziness What are PatientsLikeMe members saying about vertigo? “I was bumping into walls and chairs, was uncoordinated, and ‘dizzy’ when I laid down, however, the little dizzy feeling was so pronounced the entire room was spinning with such force I had to hold on to the ground ( palms down) to make sure I wasn’t actually moving.” “I am spinning counter-clockwise… with a funky little reflective silver spot in my field of vision…” “The sickest I’ve …

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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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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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