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Timothy L. Vollmer M.D. Program Director, BNI Neuroimmunology Program
Barrow Neurological Institute
St. Joseph's Hospital and Medical Center
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Stan Swartz, CEO, The MD Health Channel "WE PRODUCED THE FOLLOWING 9 VIDEOS FOR YOU!"
Simply click the "video" buttons below: .
"MS Can Not
Rob You of Joy"
"I'm an M.D....my Mom has MS and we have a message for everyone."
- Jennifer Hartmark-Hill MD
Beverly Dean
"I've had MS for 2 years...this is the most important advice you'll ever hear."
"This is how I give myself a painless injection."
Heather Johnson
"A helpful tip for newly diagnosed MS patients."
"Important advice on choosing MS medication "
Joyce Moore
"OUR TEAM IS WORKING ON A CURE FOR MS"
Runtime: 54 sec
Runtime: 54 sec
Susan N. Rhodes Multiple Sclerosis Research
Barrow Neurological Institute
"'The 2006 Barrow Neurological Institute at St. Joseph's Hospital MS "Walk on the Wild Side" raised more than $460,000 with 3,500 walkers! Click on the blue link above to view photos"
Chris Uithoven President
National Multiple Sclerosis Society
Arizona Chapter
"THE MS SOCIETY OFFERS MANY PROGRAMS TO HELP...EVERYTHING FROM PILATES & SUPPORT GROUPS TO HORSEBACK RIDING"
Jerry Turner Program Director
National Multiple Sclerosis Society
Arizona Chapter
NEUROLOGISTS REPORTED THAT MSers WERE MOST SATISFIED WITH AND ADHERENT TO GILENYA
STUDY:
BACKGROUND:
Multiple
sclerosis (MS) is a complex disease with many therapeutic options.
Little is known about how neurologists select particular
disease-modifying therapies (DMTs) for their patients.
Stuck on the Sidelines and too young for my life to be over!
About six years ago, I was lying in bed when I became aware that I would become ill. I did not hear a voice, I just suddenly yet gently became aware that this would happen. I told no one. I was at the height of my physical health with no symptoms of illness. I was practicing yoga, working out with the elliptical machine at the gym, and running in my neighborhood on a regular basis. I ate a vegetarian diet. Later that year I was diagnosed with Multiple Sclerosis and, six months later, SLE Lupus as well.
I remember when I first noticed the fatigue. I have a mental picture of the exact moment I reached the top of a very familiar short flight of about 10 stairs, and had to stop to catch my breath because suddenly I was exhausted, winded, and I didn’t know why. There was another time I remember remaining seated at my desk for an extra half hour after my shift was over because I was too tired to walk to my car. The fatigue affects everything – my muscles, my breathing, and my cognition. I cannot get over the feeling that I have been taken out of the game too early.
I have lesions in my brain. They are maybe a centimeter wide, oval or circles maybe? They are places where the nerves have died… little specks of brain damage. On an MRI they look like pinholes in my brain. I also have one in my cervical spine – right behind my neck and another one in my lumbar spine.
My symptoms are invisible but moderate to severe in their intensity…mostly pain, chronic fatigue, and some cognitive difficulties. Humidity, heat, cold weather and stress aggravate all of these symptoms. On rare days, when the weather is a perfect 75 degrees with very low humidity I feel fantastic. The symptoms do ebb and flow but mostly they are here; achy joints, heat intolerance, migraines, back pain, etc. The worst part is the isolation – chronic fatigue’s silent companion.
My fatigued body feels thick inside like my blood weighs more than it did when I was healthy. It fills up my joints, slips between my bones … expanding to a thickness that seems to stop the flow altogether, leaving me feeling stiff. Fatigue fills up arms and they become so heavy and weak; holding them above my head depletes an absurd amount of energy. My shins/calves can feel just as heavy. Walking outside in the humidity is very uncomfortable. It takes more energy to move these heavy limbs. To state it simply, on bad days, it has become difficult just moving around.
Exercising is the best thing for my health, but most days my energy is depleted just by tidying up the home, doing some laundry. I try to squeeze in a 15 or 20 minute yoga practice. I remember days when I hit the gym before work, did paralegal work for 8 hours, went food shopping after work, came home and vacuumed my apartment. This is not plausible today. It would be overexertion and take extra time to recover --- most likely spending the next week or two mostly on the couch. I am fairly certain I would not even be able to push myself to complete those tasks today.
Fatigue has already cost me a few years of missed social gatherings, family birthday parties. I need to plan my time carefully and cautiously now when I leave my home. If I am going out for a “big day,” (for example, traveling by car 3 hours round-trip to spend a few more hours visiting with my family) I need to spend a day or two before and following the visit “resting” because the journey depletes my energy which is slow to recover. Despite careful planning, often I overexert myself just by sitting in the car, with the sun beating on me through the windshield, interacting with family.
Fatigue effects cognition, but because of this very symptom…fatigued thought processing, I am usually unaware that it is happening. It is only after the episode is over that I reflect on it and realize the fatigue negatively impacted my interpersonal communication. On most occasions the fatigue comes out of nowhere and hits me like a brick wall so that suddenly I feel as though I’ve been unplugged and just cannot go any further – it has happened in food stores, shopping malls, work, during a conversation. To go on vacation or to babysit my nieces I have to take a steroid. I have felt at the mercy of something I cannot control for what feels like so long now; but I know my journey is only beginning. I still have half a lifetime to go.
I fear the mental fatigue most. The way it slips into every nook and cranny of my daily existence. Just being in a crowded room exhausts me. My mind gets tired of processing information, but I am not really aware that this is happening. At social gatherings, which I so enjoyed at one time, I don’t bother introducing myself to anyone new for fear that I may slip into a “cog fog”, short for cognitive fog, a term used to refer to the cognitive confusion/mental fatigue experienced by lupus patients.
These are the symptoms I never expected – profound fatigue and social isolation. Social isolation even at the party – my fatigued personality is half asleep and I am locked inside myself. I spend so much time alone now that I have fallen out of the practice of socializing, and I’m not even sure what to talk about. I am the listener in the room now.
Can someone teach me to dance in the loneliness? Teach me how to transition from being very socially connected to having no social plans in sight? Having few visitors… no intellectual stimuli…. How do I get over the feeling that I have been forgotten? It makes me want to scream at people,
“Don’t you understand that I may not be the same person the next time I see you? I may not be able to go with you then…the time is now. I have less of it, I believe that. All these moments that seem so important to you all… the things you have to do… you just don’t understand how precious life is, how little time we have. I don’t have the luxury of living like my life will last and I will always be able to enjoy it – or believing that scenario exists anymore. Most people aren’t that lucky….”
I feel like I have been put on the sidelines too early. I am an outgoing young woman at a social gathering yet I remain quiet because literally I do not have the energy to hold a conversation, nor do I have the energy to get up and leave. The fatigue is paralyzing. I miss social interaction. I miss the things I can no longer do – dancing is complicated because I get winded so quickly that it is embarrassing and not worth the effort anymore. I miss enjoying cool, humid summer evenings. I miss living with the windows open. I miss my independence.
Story Source: The above story is based on materials provided byYou and Me Magazine Note: Materials may be edited for content and length
Why Costco Rules in Hearing Aids for MSers: Business Week Magazine
Costco Wholesalehighlighted a number of hot products in itsmonthly salescall this morning. Its frozen food, beauty products, and gasoline are going gangbusters, according to executives. So are its hearing aids.
Those on the line may have been checking their ears. Surely they meant Hot Pockets or hand warmers.
We followed up with Richard Chavez, Costco’s senior vice president in charge of ancillary businesses, to see just how much hearing-aid revenue the wholesaler was talking about. “A lot,” he says with a laugh. “We’re now one of the largest—if notthe largest—hearing-aid distributors in the market, but I really don’t want anyone to know that.”
Turns out, in the past four years, Costco’s hearing-aid sales have grown 26 percent a year on average, according to Chavez, who expects another 19 percent gain this year.
The company has hearing-aid centers in every country in its footprint and almost every U.S. store. It’s also ramping up a program to help its employees become licensed hearing-aid “distributors,” a process that can take as long as two years, depending on the state. Some 125 Costco workers are now in hearing-aid training.
Cornering a high-tech, health-care market seems like an anomaly for a business built on 5-pound bags of gummy bears. After all, Costco doesn’t have to carefully customize to each buyer of its toilet paper or vats of moisturizer. But shelves full of cheap, generic stuff is precisely what gave it a leg up in the hearing-aid business.
The average person who needs a hearing aid waits about seven years before actually getting one, according to Chavez. As their hearing degrades, they gradually get used to it. And then there is the sticker shock: Aids generally costs thousands of dollars and often aren’t covered by insurance. In other words, potential hearing-aid customers aren’t inclined to make a trip to their local audiologist. But a lot of them are going to Costco already, where all they have to do is walk by the sound booth.
This all became clear to Chavez about 10 years ago. “I remember thinking, We have a lot of traffic, and we don’t have to advertise,” Chavez says. “It was one of those classic little business moments, where you see the opportunity right in front of you.”
From there it was a matter of Costco bringing its economies of scale to bear—approaching a high-tech, highly customized product the same way it does frozen shrimp and fruit roll-ups. It tapped the industry’s main manufacturers to source a line of in-house, Kirkland brand hearing aids, which start at around $500 each. It lured skilled audiologists with nice benefits and pay packages, and it began opening hearing-aid centers like crazy.
In the past 10 years, the number of Costco stores with hearing booths quadrupled to almost 500. To be sure, there is less low-hanging fruit. Wal-Mart and its Sam’s Club stores sell plenty of hearing aids, and a wave of consolidation has made the rest of the market much more sophisticated than a smattering of audiologists hanging shingles.
Costco, however, has a new plan. It wants to keep its sound booths open later and convince younger customers to try hearing aids. “The industry has done a great job of telling people hearing aids are for the old and disabled,” Chavez says. “The Holy Grail is in how we get them to come in earlier.”
Overview of the Epidemiology, Diagnosis, and Disease Progression Associated With Multiple Sclerosis
The etiology of MS is unknown, but it is likely due to complex interactions between environmental and genetic factors and the immune system. The clinical manifestations and the course of MS are extremely variable, but most patients accumulate disability over time. To optimize treatment outcomes, clinicians need to be familiar with the immunopathogenesis, symptoms, and natural course of the disease, and the recently revised MS diagnostic criteria. click to read
As Teva searches for its footing, billionaire Soros ups his stake - FiercePharma
George Soros
Piece by piece, Teva ($TEVA) is working on its turnaround, and at least one key investor seems to think the company is headed in the right direction. Billionaire George Soros boosted his family office's stake in the Israeli company in the last quarter of 2013, adding 5.7 million shares to make the Israeli generics giant its largest holding.
As Bloomberg reports, Soros Fund Management upped its Teva holding to $373 million in Q4, according to an SEC filing. Bloomberg data lists Teva at 4% of the fund, worth $9.2 billion.
Naturally Occurring Packets Show Promise for Protecting Nerve Fibers in the Brain
Research exhibits one benefit of environmental enrichment at the cellular level: it repairs brain myelin, the protective insulation surrounding axons, or nerve fibers, which can be lost because of aging, injury or diseases such as multiple sclerosis
A NEW treatment for Multiple Sclerosis approved and registered
with the Therapeutic Goods Administration last month after more than 30
years of development may not be available in Australia for the
foreseeable future.
SECONDARY PROGRESSIVE MS RESEARCH CONTINUES TO PROGRESS
Researchers continue to explore different treatment approaches for secondary progressive MS
Researchers at the Collaborative MS Research Center at the University of California
at San Francisco are working on several different treatment approaches,
as well as seeking to develop molecules that may be used as biomarkers
to help doctors predict MS progression before it occurs.
For
those MS patients who have already been diagnosed with secondary
progressive MS, the Center’s research into use of the drug Natalizumab
may offer particular hope for a definitive treatment for the disease.
DESPITE
INCREASE IN MEMORY LOSS, KRIS KRISTOFFERSON MAINTAINS GREAT SENSE OF HUMOR
You can’t help but love Kris Kristofferson. Superstar singer and songwriter, Kris is also a great actor with many film credits from “A Star is Born” to “A Soldier’s Daughter Never Cries.” But Kris, who’s 77, is suffering from a form of dementia called “Puglistica.”
NEW THERAPY FOR MULTIPLE SCLEROSIS LOOKS PROMISING
A new treatment that boosts immunity to Epstein-Barr virus may benefit patients with multiple sclerosis, according to the results of an Australian study published in the Multiple Sclerosis Journal.
In their study report, Michael Pender, a professor at the University of Queensland School of Medicine, Brisbane, and colleagues describe how a patient with advanced multiple sclerosis (MS) experienced noticeable clinical improvement after receiving 6 weeks of the immunotherapy treatment.
MS SUFFERER NEEDS CANNABIS SPRAY BUT IS BEING DENIED Barry Rudd was just 53 when he was diagnosed with multiple sclerosis His uncommon form of the disease affects just 15 per cent of sufferers Mr Rudd was refused Sativex on the NHS while sufferers living a few miles away are being prescribed the cannabis spray The drug hasn't been assessed by the National Institute for Health and Clinical Excellence – meaning funding decisions are not uniform across NHS Read more »
UPDATED: Corks are a-popping at Teva with FDA nod for its new Copaxone formula
UPDATED: Corks are a-popping at Teva with FDA nod for its new Copaxone formula
Teva Pharmaceutical Industries hit the finish line in its long race
to develop a longer-acting formulation of its multiple sclerosis
treatment Copaxone. Tuesday evening, Teva ($TEVA) said the FDA had approved the three-times-weekly formula, and not a moment too soon. The Israel-based
drugmaker now has till mid-May to convert as many patients as possible
to the latest and greatest version, before the original drug's patent
expires.
Teva executives predict that 45% of current Copaxone patients will
convert to the long-acting formulation. It needs as many conversions as
it can get; the original is Teva's biggest seller, with about 20% of its
revenue and 50% of its profits. In 2012, the drug brought in $3 billion
in the U.S. alone.
There's no word yet on pricing for the longer-acting dose, and Teva's
full-year 2013 figures aren't yet out, so there's no way to guesstimate
how much a 45% conversion would be worth, dollar-wise. We'll leave that
number crunching to the analysts; their consensus estimates are for
$4.2 billion in global Copaxone sales for 2013.
Suffice it to say that Teva should be thrilled if its conversions
keep ahead of generic erosion once copycat rivals hit the market. With
patent protection till 2030 on this model, it could pay off for many
years to come. But that's not a given; new formula or old, Copaxone does
face competition from other brands, including the Novartis ($NVS) pill Gilenya, Sanofi's ($SNY) Aubagio, and Biogen Idec's ($BIIB) new-and-hot Tecfidera.
The new formula is shipping immediately and will be available to
patients "within days," the company said in a statement. Teva has
staffed up at its patient support center--Shared Solutions--to help
current patients move to the thrice-weekly formulation. That means help
navigating insurance coverage, finding the right pharmacy, and for some,
financial assistance. Patients can even call the hotline directly to
ask to switch. Of course they can also call their doctors, and DTC ads
will no doubt soon urge them to do so. And Teva reps have been gearing
up for some time to spread the word to physicians.
The company thought it would have 18 more months to persuade patients
to make the Copaxone switch, but a U.S. appeals court last year
invalidated a patent that expired next November. Now, the fuse runs out
in May. Teva hasn't given up on the original formula, though. Last week,
the company asked the U.S. Supreme Court to take up its patent case.
And it's still arguing for stepped-up FDA scrutiny for any would-be
Copaxone copycats. Meanwhile, Teva continues to cut costs and lay off
workers in a worldwide restructuring designed to save $2 billion.
- see the Teva release Special Reports:Top 10 Drug Patent Losses of 2014 - Copaxone | Top 10 Generics Makers by 2012 Revenue - Teva Related Articles: Teva appeals to Supreme Court for help thwarting Copaxone rivals Teva braces for a $550M hit from Copaxone generics CHMP recommendation adds to Teva's financial turmoil Teva plots 5,000 more job cuts in $2B savings drive
European regulators recommended against Teva Pharmaceutical's ($TEVA) laquinimod, marring the Israeli company's odds of crossing the finish line with its once-promising multiple sclerosis treatment, a drug it hopes can dull the blow of the soon-to-go-generic Copaxone.
The European Medicines Agency's Committee for Medicinal Products for
Human Use took issue with the drug's risk-benefit profile, pointing to
safety risks that popped up in animal studies and weren't dispelled by
human trials. Long-term exposure to the drug was tied to a higher
occurrence of cancers and some dangers for pregnant women, CHMP said,
and regulators weren't convinced by Teva's proposed safety measures. On
the efficacy side, despite laquinimod's ability to slow the progression
of MS-related disability, regulators were unimpressed with the drug's
effect on relapses.
But Teva and partner Active Biotech
aren't giving up, requesting a re-examination and planning to "liaise
closely with the EMA" in hopes of salvaging laquinimod's future in
Europe.
The rejection is the latest in a long line of woes for the oral drug,
which endured two Phase III blemishes after failing to significantly
reduce relapse rates in MS patients. In a third late-stage study,
laquinimod met its primary endpoint of delaying disease progression,
Teva said, but analysts remain skeptical on whether it can contend with
Biogen Idec's ($BIIB) recently launched Tecfidera.
Teva has remained optimistic about the drug through and through, and the company believes it can secure FDA approval by 2018.
Meanwhile, Copaxone, Teva's $4-billion-a-year MS mainstay, is on the
verge of generic competition, with patent protection set to expire next
year.
- read Teva's release
- check out CHMP's statement (PDF)
Immunology of Relapse and Remission in MS: Eighty percent of individuals with multiple sclerosis (MS) initially develop a clinical pattern with periodic relapses followed by remissions, called relapsing-remitting MS (RRMS). This period of fluctuating disease may last for a decade or more.
Read more »
Imaging Technique Shows Brain Anatomy Change in Women with Multiple Sclerosis, Depression "Newswise — LOS ANGELES (Jan. 30, 2014) – A multicenter research team led by Cedars-Sinai neurologist Nancy Sicotte, MD, an expert in multiple sclerosis and state-of-the-art imaging techniques, used a new, automated technique to identify shrinkage of a mood-regulating brain structure in a large sample of women with MS who also have a certain type of depression.
In the study, women with MS and symptoms of “depressive affect” – such as depressed mood and loss of interest – were found to have reduced size of the right hippocampus. The left hippocampus remained unchanged, and other types of depression – such as vegetative depression, which can bring about extreme fatigue – did not correlate with hippocampal size reduction, according to an article featured on the cover of the January 2014 issue of Human Brain Mapping."
New toxin found in dirt and certain strains of food bacteria may trigger MS... Something so simple. Love it!
This sounds so interesting; imagine something so simple as dirt or bacteria in food.
Epsilon toxin may be a trigger for MS
MS is thought to result when genetically susceptible individuals are exposed to one or more environmental triggers. But while we have not yet firmly identified the triggers, there is increasing evidence, like this latest research, that a toxin called epsilon produced by certain strains of food bacteria is one of them, as Dr. Linden explains:
Medical Marijuana May Be an Option in Guam Soon: It's up to the voters
Sen. Tina Muña Barnes, D-Mangilao, amended Bill 215, which, if it is passed by senators and becomes law, will put the question on the General Election ballot as a referendum. "After discussing this issue at length with my colleagues, the overwhelming majority of senators from both parties felt that an issue of this importance should be decided by the people directly," said Barnes. "Rather than losing the momentum that we have built up, and true to our commitment to the people of Guam, Sen. Yamashita and I agreed to have the matter decided by referendum and we substituted the bill to allow for that." Barnes said the question that would be placed on the referendum is: "Do you support the Joaquin 'KC' Concepcion II Compassionate Cannabis Use Act of 2013?" The two options for voters are simply "yes" and "no." Currently, medical marijuana is legal in 20 states and Washington, D.C., according to ProCon.org, a nonprofit group that aims to provide facts on controversial national issues. In 2012, voters in Colorado and Washington states decided to legalize marijuana for recreational use, according to The Associated Press.
Barnes said there was a lot of good feedback from the community and was hopeful the bill could have been vetted in session. READ MORE
A new way: Foundation lines up generic heart drug for multiple sclerosis trial
A generic high blood pressure drug could be a new treatment for Multiple Sclerosis Patients. This study is being "championed" by a Bay Area nonprofit organization.
There will soon be a Phase I study of the drug being launched by the Myelin Repair Foundation of Saratoga.
There are also concerns that the use of this medication will not be approved in the US (even with a prescription). However, if the makers "tweak" the formula of the drug and get patents for it to treat MS, the company may be able to charge an amount that will cover clinical trial costs.
Researchers from the University of Alabama at Birmingham (UAB) have discovered a new immune protein influencing autoimmune diseases such as lupus and multiple sclerosis. Read more »
Practice adding links to this post below. try to keep the headlines as short as possible! go this site to learn how they shorten headlines: www.DrudgeReport.com
NEW HOPE OF A MIGRAINE CURE: HUGE STUDY OF DNA FINDS CLUE IN OUR GENES
"Hopes of a migraine cure have been boosted by the discovery of genes linked to the crippling headaches. In the largest study ever to look at migraines, researchers have identified five more sections of our DNA associated with their onset. They have also confirmed the importance of seven more of these ‘genetic regions’ which have previously been linked to migraines. Most of them contain genes responsible for controlling brain circuitry or maintaining healthy brain tissue, while some are also linked to healthy circulation and cardiovascular disease. Scientists say the research, which looked at more than 100,000 genetic samples, offers a fresh understanding of what triggers migraines.
Chronic Conditions & Medicare: Special Needs Plan (SNP)
If you have a chronic condition, you may be able to get a special Medicare plan called a special needs plan (SNP). It's a type of Medicare Advantage Plan, also called Part C and D plan. This plan covers all of the services covered in a Part C plan and prescription drug coverage in a Part D plan.
To join a Medicare SNP, you must have Medicare Part A and Part B. You also must live in the plan's service area. Then, you may be eligible if at least one of these is true for you:
*You have one or more chronic conditions
*You live in a nursing home or need nursing care at home.
"Since becoming Biogen Idec Inc.'s chief executive three years ago, George Scangos has helped quadruple the company's market value as expectations built for its latest multiple-sclerosis drug. Now, he is under pressure to deliver on those hopes by successfully guiding the biggest product launch of his career.
Biogen's new pill, Tecfidera, is the most-anticipated treatment for multiple sclerosis in more than 15 years, doctors say. After nearly three months on the market, prescription data indicate that the drug is on track to top analysts' estimates this year and achieve at least $1 billion in annual sales by the end of 2014. But some bumps have appeared in the road."
HUSBAND CHARGED WITH ABUSING WIFE WHO SUFFERS FROM MS
| The Salt Lake Tribune
First Published Jun 18 2013 10:01 pm • Last Updated Jun 19 2013 09:18 pm
A Riverton man is accused of abusing his wife, a multiple sclerosis patient who allegedly was found badly neglected with untreated sores and serious infections.
In charges filed Tuesday, police wrote that the woman, 55, was taken to a hospital May 8 for severe sepsis and encephalopathy. The woman’s body had multiple open sores, including a bedsore about 5 inches in diameter on her back and feces on her body, investigators wrote. Her bedding was stained and appeared not to have been changed for days; her catheter was clogged with pus, police wrote.
The woman’s children told police that her husband is her caretaker, and that he had isolated their mother from them, according to charges.
The husband, 51, was charged with aggravated abuse of a vulnerable adult, a second-degree felony.
NEW MRI TECHIQUE IMPROVES VISUALIZATION OF LESIONS IN BRAINS OF MS PATIENTS
Conventional MRI relies on measuring the amplitude of electromagnetic waves coming off of excited protons as they return to their equilibrium inside the magnetic field. Although the frequency of these signals also contains a good deal of information, it has proven difficult to create algorithms that can make sense of the data. Researchers from the University of British Columbia led by Alexander Rauscher have been studying MRI scans of brains of multiple sclerosis patients with an eye toward spotting mathematical signatures within frequency data that can identify specific tissue types. In the journal Neurology they are now reporting that they managed to spot lesion formation in the brain using their new analysis technique. Because the new methodology doesn’t require any physical upgrades to MRI scanners, it can be easily integrated into existing systems with a software update.
My Educational Video on MS and MS Trials
