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In this episode, the story of an epic, four-year battle between a
man and a health insurer.
Typically, these stories end with the same score:
Health Insurer 1, Patient 0.
This story is different.
It started in 2006, when at
the age of 37, Dave Bexfield of Albuquerque learned that he had multiple sclerosis, or M.S. Three years later,
the disease ramped up and he was forced to quit his job as managing editor of a
car magazine, in part because he could not type. He qualified for a clinical
trial, sponsored by the National Institutes of Health and conducted
by the University of Texas MD Anderson Cancer Center in Houston. He spent three
months there getting a stem cell transplant. His total bill was
just under $200,000. (Yes, though sponsored by the N.I.H., the treatment came
with a price tag.)
Mr. Bexfield tapped his savings account and hit up his parents for
the cash. Happily, the treatment worked. On one of the YouTube
videoshe’s made documenting this ordeal, he snowboards, albeit with
more than a few tumbles along the way.
“I’m better,” he said last week. “I can drive, do all sorts of stuff again.”
The disease has not progressed, and he is not on any M.S. medications.
His health insurer, Presbyterian Health Plan, declined to cover the treatment
because at the time, officials said, it was not a covered benefit under the
terms of the plan Mr. Bexfield is enrolled in, namely the Federal Employees
Health Benefits program. (Mr. Bexfield’s wife works for the Department of the
Interior, and he received coverage through her.)
A few months after Mr. Bexfield completed treatment in 2010, Presbyterian added
M.S.-related stem cell transplant trials sponsored by the N.I.H. to its
benefits for those in the Federal Employees program. A medical officer at
Presbyterian later described this timing in a letter to Mr. Bexfield as
“unfortunate” for him, demonstrating a fantastic gift for understatement.
Mr. Bexfield spent much of the next few years campaigning to overturn the
denial-of-coverage decision, writing emails, making phone calls and asking for
meetings with Presbyterian executives. Eventually he lined the walls of his
garage with letters from Presbyterian, all of them bearing bad news — 116 pages
Mr. Bexfield also enlisted anyone he could to the cause. This included the
Haggler, who in March 2013 contacted Presbyterian on Mr. Bexfield’s behalf. It
didn’t help. The Haggler received an email from Nicole Allcorn, then a
Presbyterian spokeswoman, explaining that Mr. Bexfield was simply not eligible
for reimbursement at the time he was treated, though he would have been had he
been treated just a little later.
Mr. Bexfield kept at it. Last year, he submitted a Freedom of Information Act
request, to determine exactly what the federal government had said about stem cell
treatment, and when.
“What I found out is that there was never any mandate from the feds to change
its policy regarding stem cell transplants,” he said recently. “P.H.P. had lots
of leeway in extending coverage, and when it added these transplants, it did so
To Mr. Bexfield, that meant that Presbyterian had lied to him. Specifically,
the company had stated that the federal government had required the addition of
stem cell transplants for M.S. as a covered benefit, when Presbyterian appears
to have made that decision on its own, apparently after deciding there was
sufficient evidence the treatment was effective. Mr. Bexfield wrote to
Presbyterian, outlining what he’d learned through the Freedom of Information
request. The emails, and a subsequent meeting with the company medical
director, yielded nothing.
On June 24, his claim was turned down yet again.
A few weeks later, on July 7, he emailed the Haggler, describing his Freedom of
Information findings. He used the word “lie” a lot. The Haggler forwarded that
email to Presbyterian’s spokeswoman.
The next day, everything changed. The president of Presbyterian, Lisa Farrell
Lujan, called Mr. Bexfield and offered what amounted to an unconditional
surrender. She agreed to cover not just the original expense of the treatment
but four years of accumulated interest that the money might have earned Mr.
Bexfield and his family, at 18 percent. (The insurer agreed to pay that much in
interest because that’s the rate it uses when it is late paying a medical
provider, like a physician.)
Presbyterian has since wired Mr. Bexfield $402,000 — that’s $198,000 for the
treatment and $204,000 in interest. (It adds up.) Ms. Lujan also agreed to meet
with Mr. Bexfield, along with the chief executive of Presbyterian Healthcare
Services, Jim Hinton. The two committed, in writing, to changing the company’s
claims process, to make it more responsive.
What provoked this change of heart at Presbyterian? In a phone interview, Ms.
Lujan — who took her job in April 2013 — explained that she re-examined Mr.
Bexfield’s case a few weeks ago, mostly because he’d been such a persistent
advocate for both himself and other M.S. sufferers through his website, ActiveMSers.org.
“I feel as though the individual decisions we made were correct,” she said on
the phone. “But I have the ability to take a step back and look at the whole
case. When I looked at the forest, I came to a different conclusion than those
who had looked at each individual tree.”
The need for consistent policies, she went on, had to be balanced against a
basic test of fairness. “We’re not processing widgets,” she said. “These are
people’s lives, in some cases their financial solvency.”
As for the Freedom of Information evidence, there was “never any intent to
deceive,” she said. At most, there was some confusion about the use of the word
“mandated” when Mr. Bexfield was denied coverage.
Was Ms. Lujan aware that the Haggler had written the day before the company’s
about-face? Nope, she said. News to her.
Informed of this on Monday, Mr. Bexfield actually burst out laughing.
“You think it’s possible that this was a coincidence?” he asked, rhetorically.
“And that I would then get a meeting with the president and C.E.O. and demand
interest, were it not for your email?”
The Haggler has no idea. What’s beyond dispute is that Mr. Bexfield was a model
of consumer advocacy, a savvy and tireless campaigner for his case. He nudged
the right people, rallied others to his side and wrote emails that were
measured and reasoned and that stuck to the facts.
And he’s not done yet. At the moment, he is waiting to learn whether the money
Presbyterian has already sent is taxable. Presbyterian has indicated that it
thinks it is unlikely Mr. Bexfield will be taxed but has agreed to make him
whole if it should happen — which could cost about $190,000.
Keep it brief and family-friendly, include your
hometown, and go easy on the caps-lock key. Letters may be edited for clarity
A version of this article appears in print on August 3, 2014, on page BU3 of
the New York edition with the headline: Dogged Persistence Pays Off, With
============================================= Keep CURRENT and up to date, with MS News and Information
A team of researchers has derived stem cells from the skin of people with primary-progressive MS, and induced them to become myelin-making cells, using a strategy that speeds up this process compared with previous studies. The cells repaired myelin (the insulating material that surrounds nerve fibers and which is damaged in MS) when transplanted into mice. Although the safety and potential of these cells for treating people remains to be seen, this study furthers the development of a strategy in the exciting field of cell therapy as it applies to MS. Panagiotis Douvaras, PhD, and Valentina Fossati, PhD (The New York Stem Cell Foundation Research Institute) and colleagues report their findings in Stem Cell Reports (2014; 3:1–10) The study was funded by the New York Stem Cell Foundation and the Leona M. and Harry B. Helmsley Charitable Trust, among others.
Background: There is exciting progress being made through innovative research related to the potential of many types of stem cells both for slowing MS disease activity and for repairing damage to the nervous system. At present, there are no approved stem cell therapies for MS. Stem cell therapy is in the experimental stage, and it’s important for people to have the best available information to understand this exciting area of research and make decisions related to this complex issue.
In 2013, team co-funded by the National MS Society transplanted stem cells derived from human skin into the brains of mice with a disorder that prevents them from growing new myelin. They found that the transplanted cells developed into oligodendrocytes, myelin-making cells, which then formed new myelin quickly and efficiently. Read more.
The Study: The New York team derived stem cells via biopsy from the skin of four people with primary-progressive MS. They isolated the cells in the laboratory and used a special strategy to induce them into becoming oligodendrocytes. The strategy took 75 days, which is faster than some previously reported studies. . The team then transplanted these cells into mice with a disorder that prevents them from growing new myelin. The cells formed new myelin around nerve fibers in these mice.
Conclusion: Although this was a mouse study and the safety and potential of these cells for treating people remains to be seen, this research contributes knowledge to the future development of a possible stem cell strategy in in MS. With the urgent need for more effective treatments for MS, particularly for those with more progressive forms of the disease, the potential of all types of cell therapies must be explored.
The National MS Society is currently supporting 12 research projects exploring various types of stem cells, including cells derived from bone marrow, fat and skin, and has supported 70 stem cell studies over the past 10 years.
Multiple sclerosis (MS) is a neurological disease that involves the central nervous system (CNS), the nerves that comprise the brain and spinal cord. It has two major features:
Destruction of myelin, a fatty insulation covering the nerve fibers, is the main characteristic of MS. The end results of this process, called demyelination,are multiple patches of hard, scarred tissue called plaques or lesions. Sclerosis comes from the Greek word skleros, which means hard.
Damage of axons, the fibers that carry electric impulses away from a nerve cell, is also a major factor in the permanent disability that occurs with MS.
Myelin is the layer that forms around nerves. Its purpose is to speed the transmission of impulses along nerve cells.
The symptoms, severity, and course of MS vary widely depending partly on the sites of the plaques and the extent of the demyelination.
AUTOIMMUNE DISEASE PROCESS
Multiple sclerosis is thought to be an autoimmune disorder. In autoimmune diseases, immune factors attack the body’s own cells. In the case of MS, the immune system attacks the tissues that make up myelin. The damage to myelin, and nerve fibers (axon), is caused by overactivated T cells. T cells are a type of white blood cells called lymphocytes.
TYPES OF MULTIPLE SCLEROSIS
Doctors generally group multiple sclerosis into four major disease course categories:
Relapsing-Remitting MS. Relapse-remitting MS (RMSS) is the most common form of multiple sclerosis. About 85% of patients are first diagnosed with this type of MS RMSS is marked by flare-ups (also called relapses or exacerbations) of symptoms followed by periods of remission when symptoms improve or disappear.
Secondary-Progressive MS. Some patients with RMSS go on to develop secondary-progressive (SPMS). (For many patients, treatment with disease-modifying medications helps delay this progression.) In SPMS, the disease course continues to worsen with or without periods of remission or leveling off of symptom severity (plateaus).
Primary-Progressive MS. About 10% of patients are diagnosed with primary-progressive MS (PPMS). In PPMS, symptoms continue to worsen gradually from the very beginning. PPMS has no relapses or remissions. There may be periods of occasional plateaus. This type of multiple sclerosis is more resistant to the medications typically used to treat the illness.
Progressive-Relapsing MS. Progressive-relapsing MS (PRMS) is a rare form of MS, occurring in less than 5% of patients. It is progressive from the start with intermittent flare-ups of worsening symptoms along the way. There are no periods of remission.
Symptoms of multiple sclerosis appear in a variety of ways. Most patients first have a single attack of symptoms, a neurological episode called a clinical isolated syndrome, which typically occurs between the ages of 20 and 50. Initial symptoms may be mild enough that patients do not always seek medical care. Once a second attack occurs, the patient is considered to have relapsing-remitting multiple sclerosis. Much less commonly, the disease is progressive from the start, with the patient having more or less continuous symptoms.
Symptoms in multiple sclerosis depend on the location of the nerve lesion. Not all symptoms affect all patients.
Symptoms more likely to occur earlier in the disease include:
Vision Problems. Optic neuritis, inflammation of the nerves in the eye, is a common early symptom in over half of patients. Patients may initially experience blurred or double vision, usually because of problems with one eye. As the condition progresses, vision loss increases, although total blindness is rare.
Tingling and Numbness Sensations. Tingling, crawling or burning sensations, or loss of sensation can occur. Patients may feel sensations of intense heat or cold. Symptoms often begin at the end of the legs or arms and move up towards the beginning of the limb. L’Hermmitte’s sign, which is caused by lesions in the cervical spine in the neck, is an electrical buzzing sensation that runs down the back and into the legs. It occurs when bending the neck forward.
Muscle Weakness and Spasms. Patients can feel weakness, clumsiness, or heaviness in the limbs. They may have difficulty with finger dexterity. Muscle spasms and stiffness (spasticity), particularly in the legs, occur in an initial attack of MS in about 40% of patients.
Problems with Balance and Coordination. Patients have an unsteady gait and difficulty walking normally and keeping their balance. They may have trouble grasping small objects. These problems can be compounded by other common MS symptoms, such as dizziness and tremor. Ataxia (lack of muscle coordination) and tremors (shaking or trembling of limb) affect up to half of patients.
Fatigue. Fatigue is the most common and debilitating symptom of MS and often occurs early in the disease. Fatigue is typically worse in the late afternoon and improves in the early evening, and may be accompanied by an increase in body temperature. At the onset, this occurs in about 20% of patients, but as the disease progresses, this is a significant symptom in nearly all patients
OTHER COMMON SYMPTOMS
Other common symptoms that progress over time include:
Bladder and Bowel Problems. Some patients have problems emptying their bladder (urinary retention) and bowels (constipation) or find they cannot control their bladder and bowels (incontinence). Patients with urge incontinence need to urinate frequently or are unable to reach the bathroom before leakage occurs. Bladder problems, and catheterization for urinary retention, can lead to urinary tract infections.
Pain. About two-thirds of patients have pain at some point during the course of the disease, and 40% are never pain free. MS causes many pain syndromes; some occur for a short time while others continue for a long time. Some worsen with age and disease progression. Pain syndromes associated with MS include trigeminal (facial) pain, powerful spasms and cramps, pressure pain, stiffened joints, and a variety of sensations, including feelings of itching, burning, and shooting pain.
Sexual Dysfunction. Sexual dysfunction is a common problem, occurring in more than 70% of patients. Men are likely to have erectile dysfunction, and women often have problems with vaginal lubrication. Sexual dysfunction appears to be highly associated with urinary dysfunction.
Speech and Swallowing Problems. Up to half of patients have trouble chewing or swallowing. Some patients have slurred speech and problems speaking clearly.
Thinking, Concentration, and Memory Problems. Cognitive problems, such as having trouble concentrating, reasoning, and solving problems, affect about half of patients. Up to 75% of patients have problems with memory. These disabilities can create difficulties in the workplace.
Mood Swings. Depression is very common and is sometimes very severe. Depression can be caused both by physical changes in the brain as well as emotional response to the stress of dealing with MS. About 10% of patients suffer from psychosis (manic depression and paranoia). About 5% of patients with severe MS have uncontrolled and extreme mood swings where they alternate between uncontrollable laughing and weeping (pseudobulbar affect).
POSSIBLE SYMPTOM TRIGGERS
Some patients find that MS flares (relapses) are triggered by certain factors. Possible symptom triggers include.
Infections. Viral and bacterial infections, including urinary tract infections, may provoke MS symptoms.
Heat and Cold. Sudden changes in temperature or humidity can trigger symptoms. Many patients with MS have heat intolerance and find that heat worsens their symptoms.
Stress. Many patients report that stress worsens their symptoms.
Multiple sclerosis is not a fatal disease. Except in rare cases of severe disease, most people with multiple sclerosis have a normal or near-normal life span and usually die from the same conditions (heart disease, cancer) that affect the general population. Still, MS symptoms can negatively affect quality of life. Suicide rates among patients with MS are higher than average.
The majority of patients with MS do not become severely disabled. Twenty years after diagnosis, about two-thirds of people with MS remain ambulatory and do not need a wheelchair, although many of them may use a cane or crutches for walking assistance. Some patients use an electric scooter or wheelchair to help cope with fatigue or balance problems.
The severity of the disease, and how the disease progresses, varies widely from patient to patient and is unpredictable. About 20% of patients remain asymptomatic or become only mildly symptomatic after an initial clinical event. Another 20% experience a rapidly progressive condition. Most patients, however, will have some degree of disease progression.
Women tend to have a better outlook than men. Factors that determine a higher risk for a severe condition include:
Age over 40 years at the time of onset of symptoms
Initial symptoms that affect motor control, mental functioning, or urinary control
Initial symptoms that affect multiple regions of the body
Attacks in the first years that are frequent, or a short time between the first two attacks
Rapid progression to disability
MS that is progressive from the beginning or becomes progressive shortly after the onset
As with other autoimmune disorders, the exact cause of MS is unknown. A combination of environmental and genetic factors likely plays a role.
Multiple sclerosis is not hereditary, but genetic factors appear to play a role in making some people susceptible to the disease process leading to the condition. The most significant genetic link to MS has been identified in the major histocompatability complex (MHC), a cluster of genes on chromosome 6 that are essential for immune system function. A much smaller percentage of MS cases may be due to variations in interleukin-7 (IL-7) and interleukin-2 (IL-2) gene receptors, which are also related to immune system regulation.
Multiple sclerosis is more common in certain geographical areas of the world, particularly areas that are farther from the equator. Prevalence is generally highest in northern European and North America. The clustering of MS cases in these regions has led researchers to investigate whether certain toxins, infections, or vitamin deficiencies (such as vitamin D) may play a factor in triggering MS in genetically susceptible people.
Infectious organisms, mainly viruses, have long been a suspect. They include Epstein-Barr virus (the cause of mononucleosis), herpesvirus 6, herpes simplex virus, influenza, measles, mumps, varicella zoster virus, cytomegaolovirus, respiratory syncytial virus, and Chlamydia pneumonia. However, no direct link has been proven between these infections and multiple sclerosis. There is no evidence that any type of vaccination cause multiple sclerosis.
About 400,000 Americans and 2.5 million people worldwide suffer from MS.
Onset occurs between the ages of 20 and 50 years in 70% of patients with the average age about 30. The disease also occurs in both younger and older individuals. It rarely develops before age 15 or after age 60, however.
MS is about 2.5 times more common among women than men. The gender gap is strongest among people who develop MS at a younger age. However, some research indicates that men may be more disabled by the disease than women.
RACE AND ETHNICITY
Multiple sclerosis occurs worldwide but is most common in Caucasian people of northern European origin, especially those of Scottish descent.
A family history of the disease may put some people at risk for MS, although the risk for someone inheriting all the genetic factors contributing to MS is only about 2 - 4%. Some research indicates that family members who have MS tend to develop the disease at around the same age. However, family history does not predict whether one family member will experience the same disease severity as another family member.
POSSIBLE PROTECTIVE FACTORS
Estrogen and Oral Contraceptives. Higher estrogen levels may temporarily lower the risk of developing multiple sclerosis. Studies indicate that oral contraceptives (which contain estrogen) and pregnancy delay the onset of multiple sclerosis. The risk for a first clinical attack increases, however, in the 6 months after a woman gives birth.
Most patients first seek medical help after a first attack of symptoms called a clinically isolated syndrome (CIS). Not all patients who have a CIS go on to develop MS, and it is difficult to predict which patients will or will not.
Multiple sclerosis can be challenging to diagnose as there is no one test for it, and a number of other conditions may mimic its symptoms. To confirm a diagnosis of multiple sclerosis the doctor needs to find:
Evidence of nerve damage in at least two different areas of the central nervous system (brain, spinal cord, and optic nerves)
Evidence that the damage occurred in episodes that happened at least one month apart
No evidence that the damage is caused by other conditions
A diagnosis of multiple sclerosis is based on results from a combination of various tests. These include the patient’s medical history, neurological exam, magnetic resonance imaging (MRI) scans, evoked potential tests, and possibly a spinal fluid test.
The doctor will ask about the patient’s personal and family medical history, including lifestyle factors, prescription or other drug use, and other medical conditions that the patient or relatives may have had. The doctor will ask the patient to describe the symptoms experienced, when they occurred, and how long they lasted.
In a neurological exam, the doctor will test the patient’s vision and reflexes and evaluate balance, coordination, and muscle strength.
EVOKED POTENTIAL (EP) TESTS
This is a simple and painless electrical test of nerve function that assesses how long it takes nerve impulses from the eye, ear, or skin to reach the brain. It involves having electrodes placed on the scalp over specific areas of the brain that process sensory information. Evoked potential tests can be used to evaluate nerve transmission for vision, sound, or muscle responses in the legs or arms.
MAGNETIC RESONANCE IMAGING
Magnetic resonance imaging (MRI) scans are important diagnostic tools in MS and are used for diagnosing multiple sclerosis, tracking changes over time, and helping to determine treatment effectiveness.
MRIs scans can detect bright patches that indicate areas of damaged myelin and injured tissue (lesions) caused by MS. However, about 5% of people who are confirmed to have multiple sclerosis based on other diagnostic criteria, do not show evidence of lesions in an initial MRI.
Once diagnosed, periodic follow-up MRIs can be used to track the disease and effectiveness of treatments in two ways:
By distinguishing new lesions from old ones
Revealing increasing or decreasing numbers of lesions within the central nervous system over time
CEREBROSPINAL FLUID ANALYSIS
A spinal fluid test by itself cannot confirm or exclude multiple sclerosis but it can be useful when combined with other tests. Obtaining a sample of spinal fluid requires a lumbar puncture, or spinal tap. Spinal fluid in patients with MS usually contains unusually high levels of immunoglobulin G (IgG) antibodies as well as other proteins and fragments of myelin. These can be signs of an autoimmune disorder, not necessarily multiple sclerosis.
A lumbar puncture, or spinal tap, is a procedure to collect cerebrospinal fluid to check for the presence of disease or injury. A spinal needle is inserted, usually between the 3rd and 4th lumbar vertebrae in the lower spine. Once the needle is properly positioned in the subarachnoid space (the space between the spinal cord and its covering, the meninges), pressures can be measured and fluid can be collected for testing.
RULING OUT OTHER DISORDERS
The symptoms of MS overlap with a number of other diseases that must be ruled out. These conditions include stroke, alcoholism, emotional disorders, Lyme disease, chronic fatigue syndrome, fibromyalgia, AIDS, cervical spondylosis, certain neurologic degenerative illnesses, transverse myelitis, and certain other autoimmune disorders (hypothyroidism, scleroderma, Sjogren syndrome, vasculitis, and systemic lupus erythematosus).
Because this NY Times article is old, we are not providing their listing of medications as this report was prepared prior to the Oral Medication
To see the continuation of this article and the resources used, click here
A new, published study of children and adults with MS revealed that individuals with higher vitamin D levels may experience less severe attacks of acute optic neuritis (AON). Younger age, attack severity, and female gender all had an impact on AON recovery. It is estimated that 15 to 20 percent of people with MS experience AON.
Lead author Muhammad Malik, MD, principal investigator Tanua Chitnis, MD, colleagues from the Partners Multiple Sclerosis Center, and fellow researchers studied three groups of patients. The first was composed of 253 adult AON patients and the second was composed of 38 pediatric AON patients; both groups had AON as their initial presenting symptom for MS. The third group was composed of 101 individuals with AON who did not experience AON as their initial symptom. All patients were selected from the Comprehensive Longitudinal Investigation of Multiple Sclerosis at Brigham and Women’s Hospital (CLIMB) Study at the Partners Multiple Sclerosis Center.
Although the authors believe vitamin D plays an important role in AON attack severity, they said that more studies are warranted. This study was published in the journal Neurology.
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NARCOMS is interested in your opinions on marijuana and
medical marijuana to treat MS symptoms and we invite you to participate in
the NARCOMS Ancillary Marijuana Survey.
Because this survey asks about use of a drug that is not
legal everywhere, we understand that you might be uncomfortable if the answers
were in any way linked to your NARCOMS information, so they wont this short
survey will be completely anonymous:
We hope that you will consider participating in this
study, but as with any research study, the decision to participate is
completely up to you. The survey is open
until August 31, 2014. For further details about the study, please refer to the
cover page of the survey or the attached letter. Additional information can
also be found in the Summer 2014 issue of NARCOMS Now, pages 10-11, http://www.narcoms.org/narcomsnow/).
Results of the study will be summarized in a future issue of the NARCOMS Now
Thank you for your time and participation!
The NARCOMS Team
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Expanded Data on Disability and Cognitive Improvements in Phase II Study of Synthetic Biologics' Trimesta™ in Multiple Sclerosis to be Presented at 2014 Joint ACTRIMS-ECTRIMS Meeting July 31, 2014 -- Oral Presentation to Include Greater Detail on Clinical Outcomes, Including Significant and Unique Improvements in Cognition --
ROCKVILLE, Md., July 31, 2014 /PRNewswire/ -- Synthetic Biologics, Inc. (nyse mkt:SYN), a biotechnology company developing novel anti-infective biologic and drug candidates targeting specific pathogens that cause serious infections and diseases, announced today that Rhonda Voskuhl, M.D., the lead investigator of the Phase II clinical trial evaluating Trimesta™, the Company's oral product candidate for the treatment of relapsing-remitting multiple sclerosis (MS), is scheduled to present additional clinical outcome data, including more detailed results on cognitive and disability measures. The data will be presented at the 2014 Joint Americas and European Committees for Treatment and Research in Multiple Sclerosis Meeting (ACTRIMS-ECTRIMS) in Boston.
The abstract titled, A Combination Trial of Estriol Plus Glatiramer Acetate in Relapsing-Remitting Multiple Sclerosis: Effects on Disabilities, will be featured in an oral presentation on Friday, September 12, 2014, at 8:39am (ET).
"We are thrilled that Dr. Voskuhl will present additional clinical findings for Trimesta, an oral agent for treating MS in women. The presentation provides further data on the Phase II topline efficacy results reported in April 2014, comparing Trimesta in combination with Copaxone® to Copaxone® alone as an active control arm. The presentation is expected to provide details about the significant clinical outcome measures including relapse rate, disability, and cognition measures evaluated in this compelling trial," stated Jeffrey Riley, Chief Executive Officer of Synthetic Biologics. "If the findings are supported in further studies, Trimesta, either alone or in combination with other MS drugs, could become a leading front-line therapy for women with MS due to its unique and differentiated anti-inflammatory, as well as neuroprotective benefits."
Dr. Voskuhl commented, "The clinically significant improvement in cognitive testing in women taking Trimesta in this Phase II study is of high importance for MS specialists and patients. We believe the differentiated mechanism of action observed with Trimesta presents a new oral opportunity and has the potential to be an ideal added oral therapy to address significant unmet needs for women affected by this progressive, debilitating condition."
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This video is about my personal struggle with secondary progressive multiple
sclerosis. Without a known cause, treatment or cure for progressive MS, I feel
that I must take charge of my health destiny, I documented 365 days of what I
am doing to remain as healthy as possible, physically, emotionally and
This is the first year of three, the second beginning August 1, 2014. I am
setting new goals to accomplish more because the first year was surprisingly
successful in unexpected ways.
My hope is to hear from others facing similar challenges who may feel out of
the mainstream because we are not selected for clinical trials for treatments
of any significance.
My focus is to stay as well as I can and await a cure which may or may not
occur within my lifetime.
-Stu's Views -- WOW- this video really lit me up to where I just had to post this for you, many of you, to see.. Quite engaging and although this might not work for many, I am hoping that there will be those that truly do get inspired and act on that inspiration. THANK YOU KATHLEEN!!!!
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Managing specific issues Common “invisible” MS symptoms MS symptoms that are hard to see include fatigue, pain, cognitive problems like memory loss or trouble solving problems, weakness, blurred vision, numbness, prickly or tingling sensations, heat sensitivity, dizziness, balance/ coordination problems, and bladder or bowel problems.
It’s important to recognize that there are medications, therapies, coping strategies, self-help techniques, and self-help groups for these problems.
continue reading here, from the National MS Society
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Most of us get knocked off our chosen paths at some point. It’s what we do in such moments that determine our fate.
In 1997, I was twenty-seven, a semester away from completing my Master’s Degree at MIT, with a job offer from promising startup Sapient- when I received the diagnosis that would change my life: Multiple-Sclerosis.
MS knocked me down. It almost knocked me out but it didn’t. It motivated me to become more conscious and intentional about life, and put me on the path to VIBRANT living that I otherwise might not have found.
Today, I share with audiences through my blog, speaking, coaching and my recently published book, Shadow Summit, what I’ve learned about the Seven Keys to Vibrant Living: mind, body, spirit, emotions, professional pursuits, financial abundance, and community - to encourage health, hope, harmony and happiness for all that are searching for a more vibrant, fulfilled life.
For better or worse, I’ve learned a lot about handling this disease
I cry at sad movies. I need two cups of coffee in the morning. I sleep naked. I believe curiosity doesn’t kill the cat, stupidity does. I like kids who are curious. I scratch if I itch. I know that if you hold down that little lever in the fridge the light goes off. I vote my conscience. I get mildly upset—no, pissed—when someone takes my parking space. I inhaled. I believe no one should salt their food before tasting it. I sew. I think super-heroes don’t exist, but heroes are all around us. I eat leftover pizza for breakfast and enjoy it. I wait until April 14th to do my taxes just for a challenge. I count fat grams. I like a hot kiss on a warm night in a cool part of town. I ate glue in 2nd grade. I like verbs. I always reach around the first milk in the dairy section and grab the one behind it. I wear my emotions on my sleeve…sometimes. I dream big dreams in color.
Being disabled doesn’t mean being different.
I’m a person just like you. With feelings, opinions and convictions. Do your part. Help eliminate the barriers facing persons with disabilities. Encourage and invite disabled individuals to your parties and playgrounds. Choose places that are accessible. Let kids ask questions—it’s okay. And please, watch where you park your car.
You can make a difference.
I originally wrote this in 1997, 10 years before being diagnosed with multiple sclerosis. A woman, a talented abstract artist, needed help expressing herself—and conveying her experience of using a wheelchair—in print. As an able-bodied 27-year-old writer, I found it empowering and enlightening to approach the challenges of being disabled from such a perspective. For this 2014 edition, only one change was made (for somewhat obvious reasons): I removed the line “I check the pay phone coin return slot even though I know I won’t find a quarter.” Was I destined to be a voice in this community I’ve come to embrace and champion? Signs point to yes.
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