A web-blog (formerly known as Stu's Views and MS News), now published by MS Views and News, a patient advocacy organization. The information on this blog helps to Empower those affected by Multiple Sclerosis globally, with education, information, news and community resources.
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Disclaimer: 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.
If you rely on social media for staying connected, you’ll want to devise a special strategy for sharing (or not sharing) your health condition. And though there are laws to protect you on the job, it’s important to think through any decision to talk about MS at work.
MS affects each person differently, so what to say, who to say it to, and when to say it will vary, points out Rosalind Kalb, PhD, a clinical psychologist with the National MS Society, and co-author of Multiple Sclerosis for Dummies.
Kalb poses three questions to ask yourself, and to help you plan your communication strategy:
1. Why do I want this person to know?
2. What do I want them to understand?
3. What response am I hoping to get?
An MS diagnosis can be scary, as can a worsening of your symptoms. Kalb notes that all that fear can make you want to go to extremes — either telling everyone about your MS or telling no one at all. Using her questions can help you avoid the regret that might come from telling too many people too soon, or from keeping the news to yourself and feeling isolated from loved ones whose support would bolster you.
Talking About MS With Close Family and Friends
Kalb stresses that strong relationships require honesty. So even though you might be tempted to keep your diagnosis to yourself, or make up stories to explain away some of your symptoms, you just might have to be brave and share the news with those closest to you. “Start with your nuclear circle and work your way out,” Kalb advises when it comes to MS and friends.
There are good reasons to start close to home. Your loved ones are most likely to be the first to notice any changes in you, to help you if needed, and to be affected by the impact and costs for your care.
If you choose to tell those close to you about your MS, consider these talking points:
What MS means for you. Some family members may have preconceived notions about the disease. Because MS affects everyone differently and treatments are changing all the time, you might have to educate them about your symptoms and about the treatments you have chosen. Be ready to answer questions about MS, and patiently correct misconceptions.
What you need from them. Those closest to you will likely offer their help. Be prepared to suggest what you need when you’re telling them the news. Who is a good listener? Who can help with specific tasks? It’s a good idea to have a few answers to the question, “What can I do?”
An opportunity to meet your doctor. Consider taking a close family member along to your doctor or another health professional. It may be comforting to have the company, and your doctor can help explain your symptoms and answer any questions.
Respecting your privacy. “Tell people, ‘I’m in the process of telling others and I need to do this in my own time,’ ” advises Kalb. This is a gentle way to ask your loved ones to wait before they tell their own circle of friends and family.
Family and friends will offer to help with your MS, but they might also worry about how your diagnosis will affect your relationship. Think about these issues in advance so you can offer some suggestions to balance MS and friends/family situations. For example, if fatigue is keeping you from enjoying an afternoon of shopping with your girlfriends, plan a get-together for the time of day when you generally have enough energy or suggest a lazy afternoon at home with the girls.
Explaining MS to children can be challenging. Young children may be the easiest age group because they are naturally curious and the least judgmental, but they're also sometimes the most self-focused. The National Multiple Sclerosis Society has a newsletter (“Keep Smyelin”) that's designed for children and contains information to help parents talk about MS. Older children and teens can be difficult to talk to about anything, says Kalb, but it’s crucial to keep the lines of communication open. Sharing a resource such as Multiple Sclerosis for Dummies may help young people. “Teens can read it, think about questions, and check out the resources online themselves,” she says.
Talking About MS With a Romantic Partner
Talking to friends about your MS is one thing. But an MS discussion with a sexual partner is something else. Sharing a multiple sclerosis diagnosis with a current or potential romantic partner is most likely going to be a challenging conversation. If you’re just starting to get to know someone, Kalb says it's not necessary to share your health condition on the first date or even the second. But when you begin to feel like it’s a relationship worth investing in, let your potential partner know about your MS.
Kalb suggests thinking about when you'd want to know if the tables were turned. It’s true that some people will decide against continuing with the relationship, but others won't be deterred and will continue to want to see you.
If you’re already in a relationship, how it can weather MS may depend on how long you’ve been involved, says Kalb. Established relationships that have already overcome stressful situations should be able to survive the news and the implications of chronic illness, but younger relationships are more likely to fall apart.
One of the difficulties in the early stages of MS is that doctors don't know how the disease will progress, or who is going to eventually become severely disabled. And although more and more medications are available to help control the progression of the disease, many of them have side effects that can also be unpredictable. You’re asking your partner to go with you on an unknown journey.
Talking About MS Online
You might be tempted to post on Facebook or start a blog about your experiences. Many people find useful support networks online, but it’s important to know that posting online is “like writing on the side of a barn with permanent marker,” says Kalb. That post or tweet or blog comment could be around forever — and it's accessible to future employers and others whom you might prefer to tell in your own time, if at all.
If you want an online support network that gives you some privacy and confidentiality, try the Everyday Health communities or support groups created by the National Multiple Sclerosis Society.
Talking about MS and sharing your experiences will help you build a support network and get solutions to problems that are part of living with MS. But keep in mind that it’s important to be thoughtful about how you share your news.
Trigeminal neuralgia is a stabbing pain in the face. It can occur as an initial symptom of MS. While it can be confused with dental pain, this pain is neuropathic (caused by damage to the trigeminal nerve) in origin. It can usually be treated with medications such as the anticonvulsants carbamazepine (Tegretol®) or phenytoin(Dilantin®).
Lhermitte’s sign is a brief, stabbing, electric-shock-like sensation that runs from the back of the head down the spine, brought on by bending the neck forward. Medications, including anticonvulsants, may be used to prevent the pain, or a soft collar may be used to limit neck flexion.
Burning, aching or “girdling” around the body are all neurologic in origin. The technical name for them isdysesthesias. These pains are often treated with the anticonvulsant medication gabapentin (Neurontin®). Dysesthesias may also be treated with an antidepressant such as amitriptyline (Elavil®), which modifies how the central nervous system reacts to pain. Other treatments include wearing a pressure stocking or glove, which can convert the sensation of pain to one of pressure; warm compresses to the skin, which may convert the sensation of pain to one of warmth; and over-the-counter acetaminophen (Tylenol® and others) which may be taken daily, under a physician’s supervision.
Duloxetine hydrochloride (Cymbalta®) was approved by the FDA in 2004 for treatment of depression and treatment of pain associated with diabetic peripheral neuropathy. Cymbalta® belongs to the group of medications known as selective serotonin and norepinephrine reuptake inhibitors (SSNRIs). Although not specifically approved for use in MS, its effectiveness in diabetic neuropathy makes it a suitable candidate for the treatment of neuropathic pain in MS, and MS specialists consider it a good treatment option for people with MS.
Pregabalin (Lyrica®), also approved by the FDA in 2004, is recommended for the treatment of neuropathic pain associated with diabetes, fibromyalgia and certain types of seizures. Although not specifically approved for use in MS, it is also considered a good treatment option for people with MS.
Burning, aching, prickling or “pins and needles” may be chronic rather than acute. The treatments are the same as for the acute dysesthesias described above.
Pain of spasticity has its own subcategories. Muscle spasms or cramps, called flexor spasms, may occur. Treatments include medication with baclofen (Lioresal®) or tizanidine (Zanaflex®), ibuprofen, or other prescription strength anti-inflammatory agents. Treatment also includes regular stretching exercises and balancing water intake with adequate sodium and potassium, as shortages in either of these can cause muscle cramps. Tightness and aching in joints is another manifestation of spasticity, and generally responds well to the treatments described above.
Back and other musculoskeletal pain in MS can have many causes, including spasticity. Pressure on the body caused by immobility, incorrect use of mobility aids, or the struggle to compensate for gait and balance problems may all contribute. An evaluation to pinpoint the source of the pain is essential. Treatments may include heat, massage, ultrasound, physical therapy and treatment for spasticity.
Pain and the Emotions
Most pain in MS can be treated. But not all pain a person with MS has is due to MS. Whatever the source, pain is a complex problem that should not be ignored. Many factors may contribute, including fear and worry. A multidisciplinary pain clinic may be able to treat chronic disabling pain with medication in combination with such alternative therapies as biofeedback, hypnosis, yoga, meditation or acupuncture. Self-help may also play an important role in pain control. People who stay active and maintain positive attitudes are often able to reduce the impact of pain on their quality of life.
Neurological pain—prickling, burning, or throbbing, due to “short circuiting” of the nerves that carry sensation
Musculoskeletal pain—aching and stabbing, due to movement “dysfunction”. It is often caused by limping or twisting when limbs don’t move easily
Spasticity—spasms and muscle tightness, common when nerve pathways don’t function well
Pain is often a frustrating and sometimes difficult symptom because there may be no one simple answer. You CAN manage pain using a multidisciplinary approach. Start by talking to your nurse or physician. Ask for an assessment—to determine the sources of your pain: nerves, muscle and bone, or spasticity.
Speak with your physician about medications. Medications commonly used for nerve pain are anti-depressants and anti-convulsants. Anti-spasticity medications are available to manage pain secondary to spasticity. Muscle pain usually requires physical therapy.
Consult a physical or occupational therapist to learn about the ‘mechanics’ of your movements which may contribute to your pain. You may learn stretching and strengthening to improve your mechanics and keep painful areas moving.
Learning to use assistive equipment (such as a cane or brace) can help correct movement abnormalities and minimize the pain they cause.
Ask if applications of cold or heat or massage are good for you.
Regular exercise can be helpful in decreasing pain, but it is important to consult your health care provider to make sure you are not increasing the pain with poor technique.
Ask about biofeedback, breathing techniques, hypnosis, and meditation to help you manage stubborn pain.
Surgical procedures can be used for certain kinds of pain but only if other treatments are not effective.
Contributing editors: Staff, Can Do Multiple Sclerosis
November 14, 2012 in Neuroscience The risk of developing multiple sclerosis (MS) is highest in the month of April, and lowest in October, indicates an analysis of the available evidence, published online in the Journal of Neurology Neurosurgery and Psychiatry. The findings, which include several populations at latitudes greater than 52 degrees from the equator for the first time, strongly implicate maternal exposure to vitamin D during pregnancy. They extend previous research and prompt the authors to conclude that there is now a strong case for vitamin D supplementation of pregnant women in countries where ultraviolet light levels are low between October and March. The researchers compared previously published data on almost 152,000 people with MS with expected birth rates for the disease in bid to find out if there was any link between country of birth and risk of developing multiple sclerosis. At latitudes greater than 52 degrees from the equator, insufficient ultraviolet light of the correct wavelength (290 to 315 nm) reaches the skin between October and March to enable the body to manufacture enough vitamin D during the winter months, say the authors. The analysis indicated a significant excess risk of 5% among those born in April compared with what would be expected. Similarly, the risk of MS was 5 to 7% lower among those born between October and November, the data indicated. In order to exclude wholly or partially overlapping data, and therefore the potential to skew the data, the authors carried out a further "conservative analysis" in which such studies were left out. This reduced the number of people with MS to just under 78,500 and showed a clear link only between November and a reduced risk of MS. But this result is likely to have been due to the fact that all the excluded studies involved countries more than 52 degrees from the equator, explain the authors. When the same analysis was carried out again, but this time including all those involving people living in countries less than 52 degrees from the equator, the same seasonal trends were apparent.
“Aging is not lost youth but a new stage of opportunity and strength.” ~Betty Freidan
Today I am feeling my age. It doesn’t happen often. I usually feel younger than my chronological age. But today my legs are uncooperative and every part of my body aches. Today I feel 53.
The past few days have been rainy ones, and I am sure my body is aware of it. Downing Advil and Tylenol aren’t alleviating my symptoms. My new MS specialist advised he does not believe in the condition known as Fibromyalgia, something I was diagnosed with in addition to MS. So is it Fibro, MS or simply being 53?
“You can’t help getting older, but you don’t have to get old.” ~George Burns
After reading Jon Kabat-Zinn’s book, Mindfulness for Beginners, I began to inwardly recite his mantra,” Until you stop breathing, there’s more right with you than wrong with you.” More right with you than wrong with you. I like that – simple and true.
“Do not regret growing old. It is a privilege denied to many.” ~Anonymous
When we begin to dwell on our ailments – the ones we inevitably feel as we pass the half-century mark – we wonder if this ache or that twitch is the one that will begin our downward spiral. One reader on About.com/Senior Living had this to say about aging:
“I wonder what we would “feel” like if we didn’t know how old we actually are. I think we are heavily influenced by societal norms and expectations regarding age. So I try not to think about the actual number of my age.”
Now that I’m past 50, I’ve finally realized I am in charge of my own destiny. I now embrace my age by loving what I do and who I am. Life after child rearing, menopause and (almost) college tuition can be an exciting and rewarding time.
Life after 50 comes down to this: either we dwell on what is wrong or treasure what is right. I can’t walk long distances, so I bike instead. I can’t do aerobics, so I take gentle yoga classes. It’s all about embracing who you are, using your many abilities and maintaining a positive attitude about life.
“When grace is joined with wrinkles, it is adorable. There is an unspeakable dawn in happy old age.” ~Victor Hugo
I’ve always been a glass half full kind of girl. That philosophy has served me well. It can do the same for you.
I recently read an article by Barbara Hannah Grufferman, author and columnist for AARP entitled, “5 Infuriating Fibs About Women Over 50.” (Do yourself a favor and read it!) As I read the article, I found myself nodding in agreement. The line that truly gave me an “Aha!” moment was, “Don’t fight your age. Embrace it. Whatever it is.”
Every morning, Homa Fani, 56, of Los Angeles, spends about an hour practicing Iyengar yoga. A form of Hatha yoga, Iyengar focuses on breathing, alignment, and postures to improve strength and flexibility, and to enhance the mind and body.
Fani, who was diagnosed with multiple sclerosis more than 20 years ago, says that practicing Iyengar yoga regularly helps her better manage her disease. “When you have MS and you get up in the morning, you need to stretch your body and do things that help you continue for the rest of the day,” she says. “Practicing yoga — breathing and stretching — not only helps me physically but it also helps me mentally and emotionally.”
Fani isn’t the only one who believes strongly in the healing power of yoga for people with MS.
Shoosh Lettick Crotzer of San Luis Obispo, Calif., has been a yoga instructor for more than 38 years. She specializes in working with people who have MS,arthritis, cancer, and other limiting conditions. “I tell my students that yoga helps you live in your body more comfortably,” she says. “Yoga is not going to cure multiple sclerosis — definitely not — but it will teach you, through its postures and breathing, how to focus your mind and pay attention to your body. It can help you to feel better.”
A Gentle Approach to Yoga
Crotzer believes that people with multiple sclerosis can attend most regular yoga classes, and most yoga instructors are happy to help students adapt the postures and stretches for their disability. Many yoga stretches and poses can be done while you’re sitting, if necessary.
Crotzer suggests exploring traditional yoga with its meditative component rather than the trendy types like Bikram or hot yoga (the very high room temperature can be dangerous for people with MS), or very aerobic yoga styles. Yoga classes aren’t competitive. That’s one of the many things that makes them ideal for people.Do what you can comfortably and what makes you feel better. Think relaxation.
Eric Small, a senior Iyengar yoga instructor, director of the adaptive Iyengar yoga program for the National MS Society’s Southern California chapter, and author of Yoga and Multiple Sclerosis: A Journey to Health and Healing, says Iyengar yoga addresses many MS symptoms. Small, who was diagnosed with MS himself 60 years ago and is now 80 years old, studied in India with BKS Iyengar, the discipline’s founder.
Small says that Iyengar yoga instructors have a minimum of five years of training and can create a personalized sequence of yoga poses, called asanas. These may help address various health problems associated with multiple sclerosis, such as loss of bladder control, balance, and fatigue.
Small has been practicing Iyengar yoga for 48 years. His mornings are devoted to asanas and his afternoons to pranayama, which is a study of the breath. He credits Iyengar yoga with helping him maintain both balance and range of motion — before he incorporated it into his daily routine, he struggled with regular falls and serious fatigue. He also believes that Iyengar yoga is responsible for his outlook on life, helping him and his students “to look at the positive side of life rather than be a victim of MS,” he says.
Yoga in Action
Janet Walker, 60, of San Luis Obispo, started doing yoga on the recommendation of her neurologist about a year after she was diagnosed with multiple sclerosis in 2009. Yoga has definitely helped her cope with the tightness and stiffness that the disease causes. “I still get spasticity," Walker says. "It doesn’t make it disappear, but doing yoga makes it more tolerable.” She takes an hourlong class with Crotzer that ends with a relaxation segment, and "you just have a feeling of well-being afterward when you walk out of there,” she says.
Some days Walker, who uses a cane, says she doesn’t feel much like going to yoga class, or anywhere else for that matter, "but I force myself to go because I always feel better afterward." The only exception is if she’s absolutely too fatigued or it’s too warm out. “I don’t do well in heat, and the classroom is usually warm," she concedes. "Those days I’ll skip.”