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Saturday, July 11, 2015

MS Has Changed My Vision - a patient's story

Thursday July 09 2015 
Sometimes we don’t see things as clearly, some things we see more sharply.  One thing that is for certain, MS has changed the way I see things… 
Multiple Sclerosis – the insidious thief of a disease that it is – can and has taken much from me.  It has taken functions, it has robbed me of strength, and it has stolen stamina.  MS has replaced feeling with numbness, abilities with disability, and self-reliance with dependence.
Multiple sclerosis has also changed my vision.
More than just the nystagmus - which can have my eyes shaking in their sockets - or the double vision when I’m overtired or overheated; MS has changed the way I see things.
I no longer see a lot of the ‘big picture’ issues of the world as one image; rather as a mosaic of individual lives and stories. The tapestry of compromise politics I now see as individual threads woven for the good of one person or group over another. I see the underdog not as superhero but rather as the humble shoeshine boy simply trying to get on with life the best he can.
Sometimes I see the journey from bedroom to bathroom as my marathon. Other times I see the simple task of writing a cheque as complex calculus. And always, just outside of my peripheral vision’s ability to focus I see the possibility of my next MS attack.

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Multiple Sclerosis Symptoms Aggravated By Genetic Alterations in Patients

genetic alteration in MSWhile the majority of scientists dedicated to multiple sclerosis research focus on genetic regulators of conditions such as autoimmunity, demyelination, inflammation, and neurodegeneration, a team from the University of Lubeck in Germany, led by Saleh M. Ibrahim, MD, PhD, focuses on genetic regulators of conduction velocity. The team is uncovering how certain genetic alterations aggravate disease in multiple sclerosis patients and mice with multiple sclerosis-like experimental autoimmune encephalomyelitis (EAE).
“Impairment of nerve conduction is a common feature in neurodegenerative and neuroinflammatory diseases such as multiple sclerosis,” stated Dr. Ibrahim, as reported by a press release from the publishing organization Elsevier. “Measurement of evoked potentials (whether visual, motor, or sensory) is widely used for diagnosis and recently also as a prognostic marker for multiple sclerosis.”
The gene culprit identified by Dr. Ibrahim’s group is the inositol polyphosphate-4-phosphatase, type II (INPP4b) gene. As detailed in the team’s article published in The American Journal of Pathology, “Nerve Conduction Velocity is Regulated by the Inositol Polyphosphate-4-Phosphatase II Gene,” polymorphisms, or two variants of the same gene, of Inpp4b produce different speeds of nerve conduction in multiple sclerosis patients and mice with EAE.
Dr. Ibrahim and colleagues made their discovery through several genomic approaches, including quantitative trait mapping, congenic mapping, in silico haplotype analyses, comparative genomics, and transgenic mice. After identifying Inpp4b as the gene behind the genetic locus EAE31, which was previously shown to control motor evoked potential latency and clinical onset of mouse EAE, the team analyzed the region in 8 mice strains.

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Multiple Sclerosis: Recognition, Differential Diagnosis, and Management

25 Pages of Questions and Answers plus Diagrams and more


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Risk Assessment Ability Declines With Multiple Sclerosis Disease Severity According To Survey

The ability to assess risk may decline as multiple sclerosis disease status progresses over time, as determined by a recent study from University of Alberta in Canada. Principal investigator Esther Fujiwara, PhD, and lead author of the study, Ashley Radomski, used thegame of dice task (GDT) to challenge patients with multiple sclerosis to make risk assessments. Individuals with more severe disease were less able to make decisions when faced with risky situations.
“What we found in our study is that those patients who have increased disease severity, as indicated by a particular subtype of multiple sclerosis or by greater structural changes in the brain, did have greater decision-making disabilities than patients who were considered less severe,” said Radomski in a news release from University of Alberta. The changes seemed to be related to brain atrophy.
Radomski and Dr. Fujiwara were motivated to conduct the study to understand how multiple sclerosis may affect decisions that patients must make in their daily lives. “People with multiple sclerosis are faced with many complex decisions on a regular basis—for example, choices about which medications to take or not take, what short- or long-term effects are desirable or undesirable, which side-effects seem acceptable or unacceptable, and so on,” explained Dr. Fujiwara.

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5 Simple and Energizing Exercises to Fight MS Fatigue

By Daryl H. Bryant (1180 words)
Posted in Living with MS on July 9, 2015

One of the best ways to fight your chronic MS Fatigue is to exercise. When you maintain a regular exercise routine, you will improve your circulation and build your muscle memory. This will boost your energy and also help you maintain high energy levels throughout the day. These simple yet energizing exercises are perfect all year-round and will give you that boost without over-working your system.

Practice Yoga   5 Simple and Energizing Exercises to Fight MS Fatigue
Nothing will energize you more than a yoga routine in the morning. If you start your day with a meditative stretch and the release of your muscles, you?ll increase the blood flow throughout your body. This circulation will energize you for the morning, and you?ll notice this energy stick with you through the lunch hour. Try a few moves sitting on your bed once you wake up. Stretch your back with the Spinal Twist. Leave your feet flat on the floor, keeping your knees bent, and turn your upper body to the left and then to the right. Remember to inhale and exhale deeply on each turn. Then stand up and try the Tree Pose. Put more weight on your left leg as you lift your right foot up to your left knee. Let the bottom of your foot rest at the knee for a breath or two before you slowly drop it back down and repeat with the left foot. If your foot does not reach your knee, lift it as high as you can in order to get a good stretch. Practice these moves daily. Not only will they increase your circulation and energy, but they will reduce your stiffness and help you to be more mobile throughout the day.

Hit the Bike Trail
Bicycling is a great exercise you can do in order to strengthen muscles and increase your circulation. Increased circulation will help you fight off the fatigue brought on by your Multiple Sclerosis. Riding your bike also builds muscle memory to improve your balance. Start off slowly until you build your strength, and try not to ride at an incline. If you are on a stationary bike at the gym, choose an easy to moderate setting until you know how your body will react to cycling. Try cycling for 8-10 minutes per day until you are confident, then add on a few more minutes. In order to get the most out of your cycling routine, you can ride a recumbent bicycle at your gym in order to stay cool and comfortable. If you live near a park, easy bike paths with little to no elevation can be a great way to get outdoors. However, you?ll want to stay inside during the summer months to avoid overheating.

Lift Weights
You don't need to be a part of Cross Fit in order to reap the benefits of lifting weights. For those with MS, weight lifting can be ideal for building muscle strength. Lifting will work out a series of muscles and muscle reactions. This will increase the neural communication between these muscles, not only improving their strength but also their muscle memory. When you have strong muscles, you?ll have the energy to do the things you want to do throughout the day. You are in control of the weights, so you choose how heavy and how fast you want to lift, and you can work with a physical therapist or trainer to help pinpoint the perfect routine for you. Try out a vertical bench press machine to work out your chest muscles. This workout will increase circulation around your heart that will increase your energy. Sit down at the machine with your back straight. This will relieve the tension on your knees and legs. Adjust the weights to lift only what is comfortable, concentrating on the contraction and extension of your muscles as you lift. You can complete this routine with free weights as well. Hold the weights in your hands and slowly lift them in a straight line above and behind your head. Try starting with 5lbs and increase from there.

Swim to Stay Cool
Water aerobics will keep your body temperature cool and reduce the impact and intensity of weight lifting and cardiovascular routines. If you translate the weight lifting routine mentioned above into a water routine, you will notice you can lift more and balance better without over-stressing your MS symptoms. Swimming laps is a simple routine that can be done in any pool, and it?s a great routine for those new to water aerobics. Swim the length of your pool 1-3 times and then rest for 5 minutes before starting again. Be sure not to over exert yourself as the water can make you feel lighter than you are. Once you feel comfortable swimming reps of 8-10 laps, you can move on to weight lifting in the water. If you are interested in water routines, consult with your doctor or physical therapist about routines and classes that specifically work with MS symptoms. For more information on the benefits of swimming, check out my blog from earlier this year.

Tai Chi
According to the National MS Society, Tai Chi can improve your cardiovascular health - and strengthening your heart is one of the surest ways to increase your energy! Get the most out of your Tai Chi routine by practicing the following moves in the morning or in the early evening hours before bed. It?s often best to practice Tai Chi at night because it is perfect for relieving stress, which can cause sleep problems and exacerbate other MS symptoms when we least expect it. Similar to yoga, Tai Chi is a meditative exercise routine that boosts energy, builds muscle strength, and improves mobility. Start by standing with both feet firmly on the ground. Breathe slowly and imagine roots extending from your feet and anchoring you to the earth. Then slowly lift your right foot to your left knee and extend your right arm out in front of you. Lift your left arm above your head and arc it back behind you and then out in front of you. Hold it there and repeat the move with the right arm. Arc it behind your head as you slowly lower your right foot and lift your left. Let your body move with the motion of your arms, and repeat these moves until you wish to stop. Concentrate on the stretch and pull of your muscles, but keep your pace slow and meditative in order to strengthen your balance.

You can choose any of these simple exercises to help reduce your MS fatigue, but always confirm with your doctor and physical therapist before starting new routines or changing up your existing regimen. All of these workouts are low-impact, and only a few are cardio, so listen to your body before upping your reps or extending your workout time. If you start to feel hot or thirsty, stop and take a break. You should always stay hydrated while working out, especially during the summer months. This will keep your body stress-free and your fatigue and other MS symptoms at bay.

This MS article was found here - at MS Living Symptom Free

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Thursday, July 9, 2015

Vitamin D and the Course of Disease in Multiple Sclerosis

Article 1

In this segment, the panelists discuss environmental and genetic risk factors for multiple sclerosis and the potential impact of vitamin D deficiency on the course of the disease.

View more

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Wednesday, July 8, 2015

MS Program: "Effective Communication with Your Healthcare Team" plus "Psychological an Social Challenges of MS"

From Ft. Myers, Florida on June 29, 2015

a Two speaker program
click the above arrow and watch at your convenience

Opening remarks, provided by Jennifer Falk, MSW, CPHM

Program Presenter: Brian Steingo, M.D. - Neurology - dialogue begins at: 5:58

Dr. Steingo Discussion includes:: How to effectively communicate with your healthcare provider. Using an MS Communication Tool to help address many of your Needs
Discussion includes: The LAND of MS support including buildings of information including: Multiple Sclerosis treatment options, Symptoms, MS Relapse and a variety so much more

Plus, we have another presenter: Yvette Mallory RN PsyD - Post Doctoral Psychology Resident -Katz Counseling & Educational Psychology, Inc.

Presentation begins at 1:08:55 (approximate)

" Psychological an Social Challenges of MS"
To Discuss: Compassionate talk on the challenges of MS and the impacts on the family structure. Helping people to cope, with overwhelming situations and feelings of being lost or confused.

Program provided with a grant from Teva Neuroscience


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Stem Cell and CNS Repair -- Updates found here

 Stem Cell Transplantation in Multiple Sclerosis: Not Ready for Prime Time
 Stem cell research in multiple sclerosis (MS) is still in its infancy, with many questions remaining to be answered before it can be put to practical use. Patricia K. Coyle, MD, and Fred Lublin, MD, discuss some of the issues surrounding this potential MS treatment option.

CLICK HERE to read the updated information on both of these important subject



CNS Repair in Multiple Sclerosis: Replace, Regenerate, Restore
Patricia K. Coyle, MD, explains that current disease-modifying therapies for relapsing forms of multiple sclerosis (MS) focus on controlling future disease activity, decreasing relapses, worsening on the neurological exam, and silent MRI lesion activity. She describes central nervous system (CNS) repair as a major unexplored area in MS treatment.

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The Relationship Between Fatigue and Insomnia

The Relationship Between Fatigue and Insomnia

By Matt Allen G—June 25, 2015
Pretty much everyone with Multiple Sclerosis has experienced or has to deal with fatigue but what is fatigue? Fatigue is not just “feeling” tired; there are different types of fatigue with different causes. They may feel the same but describing the difference is almost too difficult for most people. Trying to describe the subtle difference between the different types of fatigue is like trying to describe the difference between two different shades of one color. Pastel blue VS aqua blue. That can be much more difficult than describing the difference between two different symptoms or two completely different colors. Fatigue VS insomnia and blue VS orange.
So what causes fatigue in Multiple Sclerosis? Well first we need to have an understanding of what fatigue actually is. As I said before, fatigue is not just feeling tired. We feel tired after doing hard work that burns off all our “fuel” (energy) whether it is physical work (cleaning the house, yard work, a job, etc) or mental work (paying bills, managing appointments, school, etc). Keep in mind we all have different sized “fuel tanks” meaning, everyone has a different capacity for how much energy they have to work with throughout the day and when we use all that fuel up (some faster than others) we feel tired. MS Fatigue is basically the result of running out of energy due to MS symptoms keeping you up at night or because any given task uses more energy than it should. Taking out the trash may feel like running a marathon! Why? Well that is not entirely known. The last form of fatigue is called lassitude and is unique to people with MS. It is fatigue that occurs for no reason at all generally on a daily basis even after a great night of sleep that should leave you feeling energetic for the day. Fatigue that is caused by exposure to heat or humidity is also considered lassitude. Lassitude generally feels more severe than fatigue and worsens as the day goes on making it much more difficult to complete your daily tasks. So MS-related fatigue can be caused by symptoms burning energy, tasks requiring more energy than they should, or for no apparent reason at all! The National MS Society says that about 80% of people with MS experience some form of fatigue making it one of the most common MS symptoms.

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Tuesday, July 7, 2015


MS Views and News INVITES you to this Epic Multiple Sclerosis Learning event featuring local Neurologists, a Urologist and a Personal Trainer

Free Continental Breakfast, Free Lunch, Free Learning and Free parking

2015 Annual MS Symposium – South Florida

        Neurological Aspects of Multiple Sclerosis

        November 14, 2015       *FREE Admission  

Location:   Renaissance Fort Lauderdale-Plantation Hotel,
                  1230 South Pine Island Rd., Plantation, FL 33324

Registration Check-in begins at  9:00 a.m.
9:00 – 11:00 am  --  Resources Room
9:00am –10:00am    * FREE Continental Breakfast available in Resource room
10:05am – PROGRAM BEGINS with MS Views and News announcements and appreciation

10:15 a.m.  Physician Panel - Presentations/Q&A     - 140 minutes

Jack Burks, MD  – Emerging Therapies & MS Relapse                           - 30 mins
                                       Including Myelin and Stem Cell therapy

Brian Steingo, MD   – Communication-Symptoms Mgmt, Nutrition        - 30 mins

Kottil Rammohan, MD – from Univ of Miami – Immunology of MS          - 30 mins                                                      

11:45 pm take 15 min break while Lunch is being served                       ( 15 mins )
                Complimentary Lunch served during this break

12:00 p.m. Program Resumes with Q & A Following all (3) talks              - 35 mins

12:40p.m.  -  BLADDER Issues and Urologic Dysfunction - 65 minutes
      Harvey Samowitz, MD  -                                                                - 35 mins
                   Plus Q&A -                                                                      - 30 minutes

1:45 p.m. –   Interactive Spasticity Pain Reduction      
  Jeffrey Segal, BS, CSCS, NSCA-CPT, CPTS   with Q&A           - 50 mins

*Reservations are required                                  
Reserve Online at:  
   - OR If NO internet to call Jill at: 1-203-550-7703
(Program limited to the MS Patient plus 2 Guests)

Must be at least 16 years old to attend and this will be strongly enforced

This Educational Program is supported with Education Grants from:
 Genzyme, a Sanofi Company

Program Hosted by MS Views and News – Providing Education, Information and Resources
Program to end approx 2:45pm


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MS One to One - offers Nurse interaction with MS patients

Read real answers to MS questions from our dedicated team of MS One to One® Nurses.Read real answers to MS questions from our dedicated team of MS One to One Nurses.




Get personalized support and surprising solutions from MS One to OneFind out more

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Monday, July 6, 2015

Learn of the MS News Channel's editor - an MS patient's story

"Hi there! My name is Yvonne Decelis and I have relapsing-remitting Multiple Sclerosis (officially diagnosed in December of 1994) and Fibromyalgia (diagnosed in 2010). I am currently the daily news editor at

I have a channel on YouTube that I recently added an introduction to at I just started a journal to the channel that I am striving to add new videos to on a regular basis. If you wish to subscribe you can at

I am a firm believer in the use of complementary alternative medicine (CAM) to make my quality of life better . I do use Tecfidera, but I also use low-dose Naltrexone (LDN) and exercise on an almost religious basis. I am hoping (through my channel) to form a coalition of people who suffer from invisible (or not invisible - all are welcome) disabilities. I am also hoping to share information that can help others learn to make their lives at least a little better too. We don't deserve this pain and suffering and my goal is to help to alleviate said pain and suffering for as many people as I can.

I am currently in a Tai Chi class that takes up a small "chunk" of my time twice a week and am caring for my mother's well-being once a week. I am hoping to be able to do something for Youtube either monthly or weekly (depending on popularity/requests/etc.) and I just wanted to put word out about it to people who are in the same / similar boat as I am or to people who have an interest (doctors/family members/friends). Thank you for your time!

Be as well as possible (BAWAP)!!   =D"

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Like Marilyn who likes to "DO", do not let the Summer heat keep you from doing things..

 July 2015

When Marilyn B. was diagnosed with multiple sclerosis, one of the first things she noticed was that more than ever before, she needed to stay cool just to manage her symptoms. As an active mother of three, she tried one thing after another with no success.

She had a cooling vest that she soaked in water to activate, but it just made her clothes soggy and didn’t even last that long. She had cooling neckties, but those just didn’t cool her down enough. She even tried a little novelty misting fan!

When she couldn’t take it anymore, she did some research and found that Dave Bexfield from Active MSers had one top-rated cooling vest that he labeled “the perfect cooling vest.” He said the PhaseCore® Standard Basic Vest was comfortable, concealable, convenient, and best of all – cool.

So Marilyn tried PhaseCore and everything changed.

“Oh my gosh, it’s been a life saver,” said Marilyn. “PhaseCore keeps my body temperature at a constant where I’m not overheating. I wore it this past weekend. I put it on in the morning for the 4th of July parade and then again I put it on later in the evening and I felt wonderful!”

PhaseCore Cooling Vests are heat-activated to keep the wearer’s body temperature at a constant 72°F for up to four hours. As the cooling elements absorb body heat, the user feels a gentle cooling effect that doesn’t overcool, like ice. And when it comes time to recharge, PhaseCore recharges at room temperature – no ice, no water, no fridge, no freezer.

PhaseCore, from First Line Technology, was originally developed more than a decade ago for first responders like firefighters and soldiers. First Line’s research shows that the vests in use by those men and women are generally ice vests, which cause cold shock and can be dangerous. Not only does ice have the potential to leave behind painful burns, putting ice directly on the skin can actually do the opposite of what the user intends.

“When you put ice on your body, your body starts reacting as if it were in danger of going into hypothermic shock. Your blood starts flowing faster and your internal organs start trying to warm you up, so even though your skin feels cold, your body is actually attempting to counteract that feeling,” explained First Line Technology President Amit Kapoor. “With PhaseCore cooling to a gentle 72°F, it’s just as if you’re sitting in air conditioning: not uncomfortably hot, but not uncomfortably cold, either.”

PhaseCore is ideal for people with MS who suffer from both heat and cold sensitivity, and for people – like Marilyn – who don’t suffer from cold sensitivity but just want to stay safe (and comfortable) while treating their heat sensitivity.

“I’m a mom of three kids who are extremely active in sports,” said Marilyn, who has two high school aged children in marching band and track and one toddler who loves to be outside. “In order for me to be able to do things with my children, I need a way to stay cool.”

For more information on PhaseCore, visit

As a special discount for readers of this newsletter, enter the coupon code MSVN10 for 10% off any 
PhaseCore products purchased online!

Disclaimer: MS Views and News does not endorse any one product. Before you purchase any product for MS, we do recommend you first speak with your healthcare provider

Prolactin and Multiple Sclerosis

2015-07-05 14:39
The question about the relationship between prolactin and multiple sclerosis is one that numerous researchers have been trying to answer. What do we know about the potential benefits or disadvantages of this hormone when it comes to MS?
Prolactin is a hormone that is produced by the pituitary gland. Its function in women is to stimulate breast development and milk production, but thus far there is no known normal function for the hormone in men.
Prolactin and multiple sclerosis
An interesting observation about prolactin and multiple sclerosis in pregnant women is that levels of the hormone peak during the trimester of pregnancy, at about the same time MS tends to go into remission. This prolactin and multiple sclerosis relationship continues when women choose to breastfeed.
Breastfeeding stimulates additional release of prolactin while levels decline in women who do not breastfeed. A meta-analysis has shown that women with MS who breastfed were nearly half as likely to experience a post-partum relapse when compared with women who did not breastfeed
Continue Reading

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Sunday, July 5, 2015

Mentally Run Aground

Depression and emotional symptoms of MS often go un-diagnosed.
I think I am depressed – and, I think I know why. For the past couple of months my condition has been deteriorating. This morning I am unable to wash myself or hold the electric toothbrush steady with both hands. My feet, fingers and legs feel like they have been given a numbing injection from the dentist. They ache all the time.
When I lie on my bed, or more commonly these days, on the floor, I remember the days when I used to run three miles cross country before work, hurdling ditches and streams.
In the twilight hour, when sleep is always close but never quite catch-able, I go back 20 years. In that happier place, it's always summer and the grass – freshly mown – is thick and spongy. I can smell it now as I dance through the fields, possessed by the animal joy of being young and alive.
On those early, hushed and sacred summer morning runs, with my own sweet sweat dripping down my back, I would never jog. The pace had to be fast. And, even after an intense 20 minutes, I would feel the need to sprint home, running as if my very life depended on it. I felt then I could run forever.
But my daydream never lasts long enough. And then I am back. Back to the numbness and my ever decreasing options.
My toughest challenge most mornings is to get into my wheelchair. It’s becoming harder to do simple stuff too, like using a knife and fork and turning on the light. Even going to the toilet becomes a Herculean effort and frequently involves a complete change of clothes. It bores and embarrasses me and I do not feel comfortable writing or talking about it. Using the bathroom takes me forever, and by the time I’m finished, I need to go again.
These are some of the reasons why I think I am depressed.
I spend a lot of time sleeping: it helps the days go by. I know this mood will pass. And when it does, somewhere, deep inside, I still believe that one tomorrow I may wake up feeling better.
CONTINUE reading

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Empowering Multiple Sclerosis information from MS Views and News

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For Multiple Sclerosis (MS) Patients, Caregivers, and Healthcare Professionals

'MS Views and News' provides information, education and resources for those affected by Multiple Sclerosis (MS)  via live seminars and via the internet.
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Updated January 2015