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Saturday, December 14, 2013

How MS Disability Is Measured

How MS Disability Is Measured
Multiple sclerosis (MS) is a complex disease. Multiple sclerosis progression varies from person to person. And, the various MS types of disease progress in different ways, too. Scans and other multiple sclerosis tests don't always tell the whole story about MS disability. Signs and symptoms and how well you are functioning each day -- from seeing to moving to thinking -- are also important measures of how well your central nervous system is working.
That's why a variety of tools are useful in assessing multiple sclerosis disability. These help you and your doctor gauge whether your MS is improving, progressing, or staying about the same. Doctors also use these measures in clinical studies. This helps to see how well multiple sclerosis treatment is working.
A trained examiner, often a neurologist, administers tests that help create scales like the ones below. These can provide a kind of snapshot of your MS progression.

MS Progression: Expanded Disability Status Scale (EDSS)

This commonly used scale is sometimes called the Kurtzke scale, named for the neurologist who developed it. The EDSS focuses mainly on your ability to walk. It is a less sensitive measure of other types of multiple sclerosis disability. It takes about 30 minutes to create a score. Then a few minutes are needed to establish the ratings in the EDSS scale.

Functional System Score (FSS)

On a scale of 0 to 6, FSS measures how well your major central nervous systems are working and assigns a score to your disability. This incorporates information about your gait and use of assistive devices. It also involves observation of functions like these:
  • Weakness or trouble moving limbs
  • Tremor or loss of coordination
  • Problems with speech, swallowing, or involuntary eye movements
  • Numbness or loss of sensation
  • Bowel and bladder function
  • Visual function
  • Mental functions   

The EDSS Scale

With the help of the FSS, the examiner rates your disability on the EDSS scale. It ranges from 0 to 10, with half points for greater specificity. Lower numbers indicate less severe disability. Higher numbers reflect a greater degree of disability, mostly in relation to mobility:
  • 0 = Normal
  • 1-1.5 = No disability, but some abnormal neurological signs
  • 2–2.5 = Minimal disability
  • 3–4.5 = Moderate disability, affecting daily activities, but you can still walk
  • 5–8 = More severe disability, impairing your daily activities and requiring assistance with walking
  • 8.5–9.5 = Very severe disability, restricting you to bed
  • 10 = Death
It's important to recognize that a one-point change at the lower end of the scale reflects more subtle changes than at the upper end of the scale. For example, a one-point change between 2 and 3 is not as great a progression of disability as between 8 and 9.

MS Progression: Disease Steps (DS)

This is a simple way to measure MS disability, mainly based on your ability to walk. Doctors use it as a way to know when to begin therapy and to tell how you are responding to therapy. Scores range from 0, which is normal, to 6, which means you are unable to walk at all. 
To establish the rating, you walk 25 feet. In addition, the doctor takes a medical history and performs both physical and neurological exams. Altogether, the time needed to create the rating is no more than about 30 minutes.

MS Progression: Multiple Sclerosis Functional Composite (MSFC)

The MSFC is a newer measurement system. It is sensitive to changes in addition to mobility. Although office staff can administer it, the MSFC takes more time to do, so it is currently used less in clinical practice and more for clinical trials. Computer-based tests are being developed, however, which may make it easier to use in the future.  
Here's what the MSFC measures:
  • Walking speed, using a timed 25-foot walk
  • Arm and hand dexterity, using a nine-hole peg test
  • Cognitive function, such as how well you can do math calculations, using the Paced Auditory Serial Additions Test (PASAT)

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Side Effects of MS Treatments

When you're first diagnosed with multiple sclerosis (MS), so many different thoughts and worries can race through your mind. How will it affect my life? Will I be able to work? Will I lose my ability to walk?
Having MS today is a lot different than it was a few decades ago. Medications like interferon beta, glatiramer acetate (Copaxone), and others have literally changed the course of this disease -- for the better.
MS drugs are very effective, but they're not perfect. All of them can have side effects. Most side effects are minor, but a few -- though rare -- can be more serious.

Common Side Effects of MS Drugs

The drugs that are usually prescribed first for MS -- which include the interferons (Betaseron, Avonex, Rebif, Extavia) and Copaxone -- are considered to be very safe.
"Literally with the interferons, hundreds of thousands of patients around the world have taken these drugs successfully," says Aaron Miller, MD, medical director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis and professor of Neurology at the Mount Sinai School of Medicine. Miller consults for, and has received research support from several pharmaceutical companies that make MS drugs, including Biogen Idec, Teva, and Novartis.
Most side effects of the interferons and Copaxone are very mild. "In general, their side effects can be bothersome but aren't necessarily dangerous," says John Ratchford, MD, MSc, assistant professor of neurology at the Johns Hopkins School of Medicine. Ratchford also receives research support from several pharmaceutical companies.
With Copaxone and the interferon medications, the most common side effects are redness, warmth, or itching at the injection site, which usually fade over time. Some people notice a dimpling of the skin with repeated needle sticks. Injecting in different spots and placing a warm compress over the area before you do the injection are ways to help minimize these side effects.
Just over 10% of people who take Copaxone experience an unusual -- but brief -- reaction. Their heart races, their chest tightens, and they have trouble breathing. "You can get an idiosyncratic reaction, almost like a panic attack, immediately after the injection," Ratchford says. Though this reaction might feel like a heart attack, it isn't. The feeling should go away within 15 minutes without causing any long-term problems.
With interferon medications, it's typical to experience achiness, fatigue, a low-grade fever, soreness, and chills, which can make you feel like you've come down with a mild case of the flu. These symptoms should subside within a few weeks, but if they don't go away and they're bothersome, talk to your doctor about adjusting your medication.

Other Cautions



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Is Your MS Treatment Working?

WebMD Feature
Reviewed by Neil Lava, MD


Multiple sclerosis (MS) is a complex, individual disease. No two people with this disease have the same symptoms, progression, or response to treatment. That makes a collaborative approach with your doctor even more important than usual. It's key to tailoring multiple sclerosis treatment just for you, and it's especially helpful if you need to make changes to your MS treatment along the way.
"Become empowered to participate in your treatment decisions," says Barbara S. Giesser, MD, clinical director of the UCLA MS Program at the David Geffen School of Medicine in Los Angeles. "It's the single most important underlying principle, especially for a chronic, unpredictable condition such as MS."
How do you do that? By seeking information from reputable sources and communicating well with your health care providers. 

When MS Treatment Isn't Working

Before you and your doctor take any steps to switch treatment, make sure you're taking your MS medication exactly as prescribed. "One of the most common causes of a poor response is simply not taking medications the right way," says Jack S. Burks, MD, chief medical officer of the Multiple Sclerosis Association of America.
Whatever you do, don't just stop taking medications because you think they're not working -- or because you think you don't need them. Talk with your doctor about your concerns. Burks' patients sometimes say, "Gee, doc, I haven't had an attack in a long time, maybe I don't need these medications," to which he responds, "Maybe the reason you haven't had an attack is because you've been taking the medicine!"
Each class of MS medication works in different ways.  So be clear about what your MS medication is designed to do before deciding that it's not working. For example, disease modifying therapies (DMTs) slow MS progression. If you're also expecting them to control all your symptoms, says Giesser, you may be alarmed if that doesn't happen.
Burks recommends starting with a basic question like this: "Given my situation, doctor, how do you decide whether or not my medication is working up to expectations?" Although a tall order, the best way is by looking at a wide range of factors from symptoms and function to number of attacks and MRI findings.
If side effects are more than you can stand, then something needs to change. If you're noticing serious changes in how well you're functioning or if you're having many more relapses than in the past, that's also a red flag, says Burks.  Document and share these changes with your doctor.
By the same token, don't equate symptom control with overall disease control. Even if you feel pretty well, your doctor may recommend a change in treatment if more lesions are showing up on MRIs or if neurologic exams are worsening, says Giesser.
However, don't switch medications unless necessary, says Burks. "When you switch to another drug, you may actually not get as good a response." That's because these drugs differ in how they work on inflammation and damage.



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Friday, December 13, 2013

Good news for many patients in Canada: Genzyme’s Lemtrada™ Approved in Canada for Treatment of Multiple Sclerosis

CAMBRIDGE, Mass.--(BUSINESS WIRE)--  Fri, Dec 13, 2013
Genzyme, a Sanofi company (EURONEXT: SAN and NYSE: SNY), announced today that Health Canada has approved Lemtrada (alemtuzumab) for the management of adult patients with relapsing remitting multiple sclerosis (RRMS), with active disease defined by clinical and imaging features, who have had an inadequate response to interferon beta or other disease-modifying therapies.
“Lemtrada is an important new treatment option for Canadians with MS. It has impressive effectiveness following two treatment courses for those patients with active relapsing MS,” said Dr. Anthony Traboulsee, Associate Professor of Neurology and Medical Director of the UBC Hospital MS Clinic of Vancouver Coastal Health. “Our own local experience in treating 35 patients through clinical trials with Lemtrada has been extremely positive.”
Lemtrada is supported by a comprehensive and extensive clinical development program that involved nearly 1,500 patients and 5,400 patient-years of follow-up. Approval in Canada follows the recent approval of Lemtrada in the European Union. Marketing applications for Lemtrada are also under review in numerous other countries, including the US and Mexico.
More than 2.3 million people worldwide have been diagnosed with MS, including approximately 100,000 people in Canada.
Lemtrada 12 mg has a novel dosing and administration schedule of two annual treatment courses. The first treatment course of Lemtrada is administered via intravenous infusion on five consecutive days, and the second course is administered on three consecutive days, 12 months later.
“The approvals of Lemtrada in Canada and the EU are further recognition of its potential as a transformative treatment option for patients living with active MS,” said Genzyme President and CEO, David Meeker. “Lemtrada is now approved in 30 countries, and we are very pleased that Canadian patients and physicians will have access to this important new treatment option.”
The Canadian approval was based on data from the Lemtrada clinical development program comparing treatment with Lemtrada to high-dose subcutaneous interferon beta-1a (Rebif®) in patients with RRMS who had active disease.
The most common side effects of Lemtrada are infusion associated reactions (headache, rash, pyrexia, nausea, urticaria, pruritus, insomnia, chills and flushing) and infections (nasopharyngitis, urinary tract and upper respiratory tract). Autoimmune conditions, including thyroid disease, cytopenias, glomerulonephritis, and serious infections can occur in patients receiving Lemtrada. A comprehensive risk management program incorporating education and monitoring will support early detection and management of these identified risks.
About Lemtrada™ (alemtuzumab)
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MS and Your Diet: Is There a Link?

By 
WebMD Feature

Reviewed by Brunilda Nazario, MD


Many foods have been touted as helpful for people with multiple sclerosis (MS). Do they work?
"There are strong reasons to think that diet could affect MS symptoms and even help treat it," says neurologist Ellen Mowry, MD, of Johns Hopkins University.
But although a healthy diet is always a good idea, there is no proof that any diet or food, on its own, treats MS.
If you want to try changing your diet to see if it helps your MS, do your homework. Make sure you've got good information from a reliable source, that you'll get all the nutrients you need, and talk with your doctor before making major changes.

What Does the Research Show?

You may have heard about certain nutrients or diets for MS. One thing to keep in mind is that there hasn't been a lot of research done in this area, and there aren't solid results showing benefits.
For instance:
Oil change. Some early studies showed promise in a diet low in saturated fat and supplemented with omega-3 fatty acids and omega-6 fatty acids. But 2012 review of research did not find any benefit for omega-3s and omega-6s. So for now, the findings are mixed.
Vitamin DLow levels of vitamin D are linked with more severe MS symptoms. The body makes  vitamin D when exposed to sunlight, and MS is more common in parts of the world that get less direct sun. 
Does that mean that taking vitamin D supplements will help? That's not certain. "I think the evidence that vitamin D supplements could help is pretty strong, but we don't know for sure," says Mowry, who is leading two studies of vitamin D and MS. Before trying vitamin D supplements, ask your doctor to test your vitamin D blood level and ask their advice on how much you should take.

Diets that people have promoted for MS include:
  • Gluten-free diet. Cutting out gluten is popular. But there's no evidence it helps people with MS, says Allen C. Bowling, MD, PhD, medical director of the Multiple Sclerosis Service at the Colorado Neurological Institute and author ofComplementary and Alternative Medicine and Multiple Sclerosis.
  • Swank diet. This diet, developed over 60 years ago, has very low levels of saturated fats. Though some studies have shown promise, none has shown a convincing benefit, Bowling says. "I don’t think the Swank diet is harmful, but it’s hard to stick to," he says.
  • Wahls diet. This diet emphasizes fruits and vegetables -- 9 cups a day - but no studies have shown a clear result.  Bowling believes its emphasis on certain nutrients leads some followers to “use high doses of many supplements.” He cautions that the safety of such high doses has not been proven. Discuss any supplements you're taking with your doctor, even if the products are natural.

MS and Diet: What Should You Do?

Though there is no magic MS diet, some dietary changes may be good for your overall health:  
Cut fat and boost fiber. Just like people without MS, your diet may have too much saturated fat and too little fiber. Changing that may help you avoid heart disease and other conditions.

Avoid extreme, untested diets. Diets that radically change how you eat could be harmful. "If you’re using a diet to treat your MS, it's really like using amedication," Mowry says. You wouldn’t take an untested drug, so be wary of an untested diet. When in doubt, talk to your doctor or a registered dietitian.

Article Source: WebMD
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The Great Stem Cell Caper - by Richard Cohen (an MS patient)

No.  That is not a corkscrew uncorking an expensive bottle of wine.  It is a medical device being screwed into my breastbone, creating a path for a hematologist, or blood doctor, to harvest bone marrow.  We videotaped the procedure because most of us, including me,  know little about the process of stem cell therapy.  But I am learning fast.
It all started in Rome, at the Vatican of all places.   Meredith and I participated in an adult stem cell conference.  I spoke and listened and learned, realizing cell therapy is not merely a future tense therapy.  The more I understood, the more I wanted in.  Cell therapy is the future. of medicine.
I am at the start of a new FDA approved, Phase One clinical trial for stem cell therapy for MS.  The sun has come out.  I am going to chronicle my stem cell journey on this blog, using original video and the written word.  For most of us, stem cell therapy is a mystery.
Stem cells are large, undifferentiated cells, meaning they are blank, ready to become whatever necessary to heal the body.  Stem cells can replicate any of the 210 cell types in the human body to supplement whatever function the other cells perform.  The stem cells here  will be autologous, meaning my own.  That lowers the risk considerably..
Bone marrow contains a rich trove of stem cells.  Marrow was extracted from my sternum in late August, in a procedure known as a bone marrow aspiration.  Meredith and a son Gabe videotaped the event for this blog.  The procedure looks more hideous than it is. The video is rated PG13.
The stem cells will be mysteriously processed for three months,  then infused into my spinal fluid.  They will become neural stem cells, cells of the central nervous system.  The cells will travel through the spinal fluid to my brain stem, where my lesions are.  In theory, the injured portion of my spinal column  will regain some function.  This has not been done much.  There are no guarantees.  I will believe anything when I see it.
My neurologist, Dr. Saud Sadiq, is a pioneer, confident but cautious.  He agrees with me that we both are explorers.  I like that.  It beats meandering down the beaten path.  People with threatening diseases cannot afford to be risk averse.  Inaction means simply giving in.   I take nothing for granted but am  guardedly hopeful.  Please stay tuned.
SOURCE:  http://richardmcohen.com/



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Thursday, December 12, 2013

A Simple Eye Test For Multiple Sclerosis

A Simple Eye Test For Multiple Sclerosis

A Simple Eye Test For Multiple Sclerosis

Health & Medicine
December 12, 2013

Researchers have developed a new instrument called the TrueField to accurately measure the pupil responses of patients with multiple sclerosis.

AsianScientist (Dec. 12, 2013) – As you step outdoors into the bright sunshine, your pupils automatically contract. Scientists from the Australian Center of Excellence in Vision Science (ACEVS) based at The Australian National University (ANU) are making use of how this ‘pupil reflex’ is connected to the brain as a potential new way of testing the severity of multiple sclerosis (MS).
Dr. Eman Ali and her ACEVS colleagues have used an instrument they are developing to accurately measure the pupil responses of MS patients and have found that the pupils of MS sufferers respond appreciably slower.
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Surveyed Neurologists Report Significantly Higher Relapsing-Remitting Multiple Sclerosis Patient Shares for Gilenya and Tysabri, Compared With One Year Ago

Recent Changes Include Earlier and More-Aggressive Treatment, According to a New Report from BioTrends Research Group


EXTON, Pa., Dec. 12, 2013 /PRNewswire/ -- BioTrends Research Group, one of the world's leading research and advisory firms for specialized biopharmaceutical issues, finds that physician-reported patient shares for Novartis's Gilenya and Biogen Idec's Tysabri are 8 percent and 10 percent among relapsing-remitting multiple sclerosis (RR-MS) patients treated with a disease-modifying therapy (DMT) across the EU5 (France, Germany, Italy, Spain and the United Kingdom)—significantly higher than those reported by EU5 neurologists surveyed in 2012. Surveyed neurologists also report that recent changes in treatment management include a shift toward earlier and more-aggressive treatment and increased use of the anti-JCV antibody assay, changes that are consistent with the increased patient shares reported for Gilenya and Tysabri. Survey data indicate that these agents occupy distinct niches, with Gilenya a preferred second-line therapy in JCV-positive patients and Tysabri a preferred second-line therapy in JCV-negative patients.
The TreatmentTrends: Multiple Sclerosis (EU) 2013 report finds that, despite fewer than 30 percent of surveyed neurologists reporting access to Genzyme's* Aubagio and Genzyme/Bayer HealthCare's Lemtrada—and given the limited time these agents had been available at the time the survey was fielded—these DMTs have nevertheless captured a 1 percent physician-reported weighted MS patient share. The data also reveal that surveyed neurologists anticipate substantial changes in DMT use in the coming months as access to Aubagio and Lemtrada expands and as new products, notably Biogen Idec's Tecfidera, become available. Neurologists indicate that Aubagio will most likely compete with first-line products (i.e., Biogen Idec's Avonex, Bayer HealthCare's Betaferon and Teva's Copaxone), while Tecfidera may replace these products as well as Merck Serono's Rebif and Gilenya. Lemtrada, conversely, will most likely compete with Tysabri or would not replace an existing DMT, suggesting anticipated use as a last-line therapy.

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Research and Markets: Secondary Progressive Multiple Sclerosis (SPMS) - Pipeline Review, H2 2013

DUBLIN--(BUSINESS WIRE)--
'Secondary Progressive Multiple Sclerosis (SPMS) - Pipeline Review, H2 2013', provides an overview of the indication's therapeutic pipeline. This report provides information on the therapeutic development for Secondary Progressive Multiple Sclerosis (SPMS), complete with latest updates, and special features on late-stage and discontinued projects. It also reviews key players involved in the therapeutic development for Secondary Progressive Multiple Sclerosis (SPMS).
Scope
- A snapshot of the global therapeutic scenario for Secondary Progressive Multiple Sclerosis (SPMS).
- A review of the Secondary Progressive Multiple Sclerosis (SPMS) products under development by companies and universities/research institutes based on information derived from company and industry-specific sources.
- Coverage of products based on various stages of development ranging from discovery till registration stages.
- A feature on pipeline projects on the basis of monotherapy and combined therapeutics.
- Coverage of the Secondary Progressive Multiple Sclerosis (SPMS) pipeline on the basis of route of administration and molecule type.
- Key discontinued pipeline projects.
- Latest news and deals relating to the products.
Companies Mentioned

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Wednesday, December 11, 2013

Avanir Pharmaceuticals Announces Results for Phase II PRIME Study


ALISO VIEJO, Calif., Dec. 10, 2013 /PRNewswire/ -- Avanir Pharmaceuticals, Inc.  today announced that PRIME, its phase II clinical trial of the investigational drug AVP-923 (dextromethorphan / quinidine) for the treatment of central neuropathic pain in patients with multiple sclerosis did not meet the primary efficacy endpoint.

In the PRIME study, AVP-923 treated patients experienced levels of pain reduction commensurate with those observed in similar studies and the improvement in pain scores from baseline reached statistical significance; however, there was no difference between the treatment arms and placebo.  Avanir believes that a higher than expected placebo response negatively impacted the study results.  AVP-923 was generally safe and well tolerated.

Avanir plans to review the detailed data from the PRIME study in conjunction with previously generated data in diabetic peripheral neuropathic pain to determine next steps for the development of AVP-923 in neuropathic pain.

About the PRIME StudyThe objectives of the PRIME (Pain Research In Multiple sclErosis) study were to evaluate the safety, tolerability, and efficacy of AVP-923 for the treatment of central neuropathic pain in patients with multiple sclerosis. The trial was a multicenter, randomized, double-blind, placebo-controlled, 4-arm parallel group study that enrolled 209 patients. Eligible patients received one of three dose levels of AVP-923 containing either 45mg DM/10 mg Q, 30mg DM/10mg Q, 20mg DM/10mg Q or placebo, daily for 12 weeks. The primary efficacy endpoint was measured based on the Numeric Pain Rating Scale (PRS) as recorded in patient diaries. Primary analysis of this endpoint correlated pain scores with dextromethorphan plasma concentrations. Secondary analysis correlated pain scores with AVP-923 dose and also compared pain scores for those treated with placebo versus drug in each dose group.

About AVP-923AVP-923 is a combination of two well-characterized compounds, the active CNS ingredient dextromethorphan hydrobromide (an uncompetitive NMDA receptor antagonist and sigma-1 receptor agonist) plus low-dose quinidine sulfate (a CYP2D6 enzyme inhibitor), which serves to increase the bioavailability of dextromethorphan. AVP-923 is being studied in several ongoing company sponsored Phase II clinical trials including agitation in Alzheimer's disease, levodopa-induced dyskinesia in Parkinson's disease and several investigator initiated studies. AVP-923 can interact with other medications and should not be used in patients taking certain drugs. AVP-923 can cause serious side effects and should not be used in patients with specific cardiovascular risk factors. These are not all the risks from use of AVP-923. AVP-923 is an investigational drug not approved by the FDA.


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Tuesday, December 10, 2013

Vitamin D might combat multiple sclerosis by blocking migration of immune cells

MS is known to be more prevalent in parts of the world furthest from the equator, where there is less sunshine to trigger production of vitamin D

Vitamin D may combat multiple sclerosis by blocking the migration of destructive immune cells to the brain, new research suggests.
The findings may help explain anecdotal reports of the “sunshine vitamin” preventing or easing symptoms, say scientists.
MS is known to be more prevalent in parts of the world furthest from the equator, where there is less sunshine to trigger production of vitamin D in the skin.
The disease is caused by the body’s own immune defences damaging myelin, a fatty insulating sheath that surrounds nerve fibres and is vital to the proper transmission of nerve signals.
Destruction of myelin leads to symptoms ranging from numbness to blurred vision and paralysis.
“With this research, we learned vitamin D might be working not by altering the function of damaging immune cells but by preventing their journey into the brain,” said lead scientist Dr Anne Gocke, from Johns Hopkins University School of Medicine in the US.
“If we are right, and we can exploit Mother Nature’s natural protective mechanism, an approach like this could be as effective as and safer than existing drugs that treat MS.”
In a person with MS, immune system cells called T-cells are primed to travel out from the lymph nodes and seek and destroy myelin in the central nervous system.
Dr Gocke’s team of researchers simultaneously gave mice the rodent form of MS and a high dose of vitamin D.
They found that disease symptoms were suppressed in the animals.
While large numbers of T-cells were found in the bloodstreams of the mice, very few were detected in their brains and spinal cords.
“Vitamin D doesn’t seem to cause global immunosuppression,” said Dr Gocke.
“What’s interesting is that the T-cells are primed, but they are being kept away from the places in the body where they can do the most damage.”
The vitamin may slow production of a sticky substance that allows the T-cells to attach onto blood vessel walls, she added.
This may help to keep them in circulation and prevent their migration to the brain.
Once vitamin D was withdrawn from the mice, MS flare-ups occurred very quickly, said the researchers , whose findings appear in the journal Proceedings of the National Academy of Science.
Peter Calabresi, a professor of neurology at Johns Hopkins and co-author of the study, said: “Vitamin D may be a very safe therapy, but we still have to be careful with it. It’s not just a vitamin. It’s actually a hormone.”
A clinical trial testing the effect of vitamin D supplements on patients with MS is currently under way at Johns Hopkins University.

Source: 
http://www.mirror.co.uk/lifestyle/health/multiple-sclerosis-vitamin-d-might-2909583



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Obamacare Hits Multiple Sclerosis Patients Hard: Losing Insurance, Higher Drug Costs

by Scott Somerville | Washington, DC | LifeNews.com | 12/9/13


Obamacare was always expected to result in some “winners” and some “losers.” The argument for the new law was that some people (especially the young and healthy) should pay a little more so that other people (the old and sick) could get the help they need. It’s troubling to discover that some of the people who may get hurt the worst are those who are the sickest.
Approximately five percent of multiple sclerosis sufferers (those who were covered by individual insurance policies) have begun to discover how Obamacare affects them personally. Whitney Johnson had a policy that covered her medical bills even though they added up to $350,000 per year. Her existing insurance was cancelled and she was invited to pick a new policy from HealthCare.gov. She had not been able to get what she needed through the Exchange, so she went directly to her insurer–only to discover that all her new options were unaffordable.  She writes:
I know I have five more IVIG treatments coming up over the next six months that cost $40,000 each. My insurance coverage ends in December, and I have to have these treatments. As a mother with a brand new baby, it’s a little unnerving to know that I may not be able to receive the care I need. It’s a little unnerving to know my health insurance that was working just fine for me was taken from me. The doctors I have used for years that have kept me this healthy will be taken from me.
Whitney is one of “small percentage” who have had their policies cancelled, but many more Americans with MS will be affected next November, when employer-provided policies must comply with the new law.  The Multiple Scerosis Association of America highlights theparticular questions MS patients need to consider. These include:
  • Are my needed medications covered, and what are my costs?
  • Can I keep my doctor and are there restrictions on which doctors I can choose?
  • What plans can I afford and am eligible for?
  • Can I afford my deductible?
  • What are my expected out-of-pocket costs for equipment I may need?
  • Do I have to try lower-cost medications before I will be approved for the drugs I use now?
Forbes Magazine worked through the cost of MS medications in today’s article, “No, You Can’t Keep Your Drugs Either Under Obamacare.
Take, for example, the drug Copaxone for multiple sclerosis.

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