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Friday, September 9, 2016

Multiple sclerosis gene discovery comes under withering attack


                                                                  
  

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By SHARON BEGLEY @sxbegle

SEPTEMBER 9, 2016


Scientists are forcefully challenging a recent study that claimed to identify a rare genetic mutation that sharply boosted the risk of multiple sclerosis. The critics cite calculation errors and say they have been unable to replicate the findings — and question why the original paper was ever published in a top journal.

The withering assault has dashed hopes that the study might quickly lead to new drugs for MS and also raised questions about how such critiques are handled: like more and more journals, the one that published the paper does not run letters to the editor, making it harder for scientists to see that the claim has been hotly disputed.

As soon as the MS claim was published in June, outside scientists expressed doubts to STAT that there was really a link between the newly discovered mutation and the disease. Since then, other experts have dug into the study in greater detail, tried to replicate its findings using a database of thousands of MS patients, and checked the original paper’s statistics. In each case they concluded there is no link between the rare mutation and MS.

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Managing MS Day-to-Day


                                                                  
  

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The post Managing MS Day-to-Day 
first appeared first on Multiple Sclerosis News Today 


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FDA Issues New Ruling on Antibacterial Soaps


                                                                  
  

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February 7, 2016

For years, consumers looking for a leg up on germs have purchased soaps and washes with labels touting their antibacterial properties. Now in a new ruling, the US Food and Drug Administration (FDA) has declared that companies selling over-the-counter antiseptic washes will no longer be allowed to market their products as such due to doubts over these products’ safety and effectiveness. 

The FDA’s new ruling will affect the way manufacturers can label products that include a list of 19 active ingredients, the most commonly used of which are the antibacterial and antifungal agents triclosan and triclocarbon. In soaps, detergents, toothpastes, and mouthwashes, these ingredients act by targeting bacteria and inhibiting their ability to reproduce. This new ruling comes almost three years after the FDA proposed a rule requiring that manufacturers of over-the-counter antibacterial products demonstrate that those washes are more effective than plain hand soap in preventing illness and are safe for long-term use. In that proposal, the FDA called for data from clinical studies demonstrating that the products were superior to non-antibacterial washes in preventing human illness or reducing infection. It stated that if companies could not prove such safety and effectiveness, those products would need to be reformulated or relabeled to remain on the market. - 


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Monday, September 5, 2016

MS diagnosis led 65-year-old to launch his own trike business


                                                                  
  

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Greg Davis, owner of Your Trike Spirit in
Greg Davis, owner of Your Trike Spirit in Deer Park, was diagnosed with MS in early 2009 and was laid off from his sales job about three months later.  He could still drive, but missed his bike. Eventually he found a recumbent trike, which inspired him to start a business. On Saturday, Sept. 2, 2016, he took customers and friends on The Great Trike Revolution Ride from Deer Park to Belmont State Park, and he talked about the need for recumbent trikes.

(Credit: Ed Betz)
Starting a business can be a daunting task for anyone.

Starting a business at age 65 with multiple sclerosis can be an even bigger challenge.









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North Delta family seeks help paying for drug to treat MS


                                                                  
  

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Christa Fox and her daughter Kayla hold jars of jam that Kayla has been making and selling to help pay for a new drug to treat her brother Kory
Christa Fox and her daughter Kayla hold jars of jam that Kayla has been making and selling to help pay for a new drug to treat her brother Kory's MS.— Image Credit: Frank Bucholtz

By  Frank Bucholtz - North Delta Reporter
posted Sep 4, 2016 

Christa Fox wants her son Kory to have the same chance to fight multiple sclerosis (MS) as is available to people in several other provinces.

The North Delta resident and licensed practical nurse (LPN) is trying hard to come up with funding for Kory to be able to take Lemtrada, a newer drug recommended by his neurologist. However, thus far the B.C. government is not funding treatments of the drug, even though several other provinces (Ontario, Saskatchewan and Manitoba) will pay for it for their residents through provincial pharmacare programs. In B.C., the drug is still being evaluated for inclusion in PharmaCare.

Kory, 19, was diagnosed with MS in 2014. Even though his mother and stepfather (her ex-husband) have drug benefit plans through their workplaces, neither plan will cover the drug treatment either.

Christa, Kory and his siblings aren’t accepting that rejection. They have started a GoFundMe page to cover the estimated $60,000 cost of the drug treatment. As of Aug. 29, the page had raised $6,600.

“If he gets this treatment, there’s an 80 to 90 per cent chance he will be symptom free for the rest of his life (remission forever). If I cannot make my goal, I will donate what I raise to the MS Society or use it towards treatment of another drug,” Christa writes on the GoFundMe page. “This is very hard for me to ask for help, but I must put my pride aside to at least try.”

Lemtrada is a new drug which that became available in Canada in 2014. It is a monoclonal antibody (a protein) which works on the immune system. Neurologist Dr. Anthony Traboulsee, who is treating Kory and is also associate professor of neurology at UBC and medical director of the MS clinic at UBC Hospital, has recommended the treatment for Kory. He believes it will repair the myelin in his spinal cord and brain and will have a positive effect far beyond the treatment cycle.


“The goal is to slow down or stop the MS from getting worse,” Christa says.


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Riding the High-Dose Biotin Train for Progressive MS


                                                                  
  

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By Debi Wilson - an MS Patient

I knew of no available treatment options for my Primary Progressive MS, so when I heard about the pure High Dose Biotin Protocol I jumped on board!
The protocol, created by MedDay in France, revolves around the vitamin Biotin (aka, vitamin B7 or H). It is recommended that the patient take 300 MG of pure Biotin per day. The clinical trial, called MS-SPI, involved 154 people with Primary Progressive MS or Secondary Progressive MS . The patients either received the Biotin pill or a placebo over 48 weeks.
The results showed that 12.6% of those given the high-dose Biotin showed improvement in disability on either the EDSS (Expanded Disability Status Scale) score or a timed walk. None of those on the placebo had improvement. There were no serious side effects noted (high-dose Biotin was also tested in relapsing and progressive MS patients with fixed visual loss in the MS-ON study). An article on both trials is available through this link.
For me, this was great news!
I discussed the Biotin protocol with my primary doctor and my neurologist, and they did not have any objections, so I started the protocol on March 9, 2016, and I have been following it for the last 5½ months.
For the first couple of months, I suffered from headaches. I usually don’t have headaches, so I knew that it was most likely from the Biotin. I have since learned that with Biotin you need to drink lots of water. Since I started doing that, the headaches have decreased greatly.
Also, I noticed the cramps and spasticity were increasing in my legs. It was extremely painful!
Now, I feel that my leg cramps and spasms are slowly improving.
I was also starting to have pain in my spine before the protocol, and now the pain is completely gone. I am able to walk a little better and have a little more energy. Not a lot more, but I will take anything I can get!
The only downside I attribute to the high-dose Biotin is that I occasionally have terrible heartburn that I didn’t have before. Hopefully, that will disappear over time.
Is Biotin the help I am looking for? I’m not sure, but at this moment it is the only option I have and it seems to be helping! I am encouraged, and on the horizon there is even more promise for PPMS.
In 2017, the drug ocrelizumab (Ocrevus, Roche) may very well make its appearance. With it comes the claims of possibly halting the progression of PPMS.
Also, HCST (hematopoietic stem cell transplants) are very exciting, with the clinical trial results stating that it could be the first MS therapy to reverse disability! There are risks with each treatment, but do the benefits outweigh the risks?
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MS Relapses During Natalizumab Therapy Traced to Drug’s Greater Impact on Regulatory T-cells


                                                                  
  

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Natalizumab (Tysabri) harnesses multiple sclerosis (MS) activity by targeting CD49, a molecule on the surface of immune cells. Now, researchers found that the drug reduces the factor on regulatory T-cells to a greater extent than on inflammatory T-cells — a mechanism that might explain disease exacerbation during treatment.
The molecule under investigation in the study, CD49, is the main factor governing migration of immune cells to the central nervous system. By blocking its actions, natalizumab is highly effective in inducing MS remission. Some patients, however, experience relapses and disease progression while under treatment.
Natalizumab treatment does not necessarily block all CD49; earlier studies have shown that the antibody is able to bind between 60 percent and 100 percent of all available molecules. Scientists also do not understand how effective natalizumab treatment is in reducing CD49 on different types of immune T-cells.






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MS Treatments May Lower Levels of Immune White Blood Cells


                                                                  
  

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September 1, 2016

Multiple sclerosis patients are at risk of developing lymphopenia, or abnormally low levels of immune defense white blood cells, called lymphocytes, according to a study that investigated lymphocyte counts in people with relapsing MS both before and after the start of treatment. The study, “Lymphopenia in treatment-naive relapsing multiple sclerosis,” was published in the journal Neurology.
Various therapies are today available to help treat relapsing MS, with the primary goal of regaining function after an attack, preventing new attacks, and, particularly, preventing disability progression. However, as with many other medical treatments, those designed for MS management can cause adverse effects. Some studies have suggested that some medications cause lymphopenia, which is risky in MS because lymphocytes are essential to protecting the body from infection.
Researchers investigated the prevalence of lymphopenia in pretreatment MS patients. The team collected and analyzed data, acquired between 2012 and 2014, from the Southampton regional MS service in the U.K. Patients were classified by  age, sex, comorbidities, category of relapsing MS, age at disease symptom onset, number of affected functional systems, dates related to pre- and post-treatment lymphocyte counts, relapse date and severity, and date of starting treatment. For control reasons, lymphocyte data were also taken from healthy individuals, matched by age and sex, treated at the same hospital for cosmetic procedures.
Using blood test data, researchers identified 764 patients. Of  these, 466 had baseline and 247 had post-treatment blood test results available, with an average of four tests per year.
Researchers detected lymphopenia in 48 patients (10%). When they looked at causes, researchers found the administration of steroids in the month before lymphopenia to be the reason in three distinct cases.
Further analysis revealed no association between pre-treatment lymphocyte count and patient criteria that included age, sex, MS category, autoimmune comorbidities,  disease duration, time since the last relapse, and last relapse severity. A comparison between observed lymphopenia in the treatment-naive MS population and matched controls also showed no statistical difference in the prevalence of lymphopenia.
After treatment with MS drugs, namely Avonex/Rebif (interferon beta) or Copaxone (glatiramer acetate), the prevalence of lymphopenia rose to 28%, with 26% of these patients having grade 1 lymphopenia and 2% with grade 2 (the higher the grade of lymphopenia, the lower the levels of lymphocytes). Results also showed that patients’ immune white blood cell lymphocyte counts declined after starting interferon beta therapy, but were not affected by glatiramer acetate therapy. Gilenya (fingolimod) was found to cause lymphopenia in all patients, and Tysabri (natalizumab) also reduced lymphocyte count compared to baseline.
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Sunday, September 4, 2016

Can Medical Cannabis be Used as Multiple Sclerosis Treatment?


                                                                  
  

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Medical Cannabis as an MS Treatment Option

Because multiple sclerosis is a progressive illness, things weren’t getting better for Couch. So one day after work a friend offered him a drag off a joint. He was reluctant until his dad said, “What do you have to lose?” The cannabis helped immediately. It didn’t fix everything at one time, but as he recalls, “I felt like a huge weight had been lifted.”
A significant amount of evidence suggests THC and CBD-based medications can be used for treating muscle spasticity associated with multiple sclerosis, but most studies have focused on synthetic derivatives. Few have examined whole-plant cannabis or many of the other MS associated symptoms. Nonetheless, cannabis seems to help the following symptoms:
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Initial evaluations for multiple sclerosis in a university multiple sclerosis center: outcomes and role of magnetic resonance imaging in referral.


                                                                  
  

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Carmosino MJ, et al. Arch Neurol. 2005.

Abstract

OBJECTIVE: To evaluate diagnostic outcomes, especially as they relate to reason for referral, of patients referred to a university-based multiple sclerosis (MS) center for possible MS.
METHODS: Retrospective medical record review of all new patient visits to University of Colorado Multiple Sclerosis Center, Denver, from January 1, 2001, to June 30, 2003.
RESULTS: Of 281 patients referred to evaluate the possibility of MS, after initial review 33% were diagnosed with MS or possible MS by the McDonald criteria. The rest had other neurological conditions (31.5%), probable psychiatric diagnoses (22.5%), or no clear diagnosis was made (12.5%). Of patients with typical, possible, or atypical demyelinating syndromes, 71%, 27%, and 0%, respectively (P<.001), had MS or possible MS. Of the 63% of patients referred on the basis of clinical symptoms and signs, 46% were diagnosed with MS or possible MS vs 11% of patients referred primarily on the basis of abnormal brain magnetic resonance imaging (MRI) results (P<.001). Of patients referred because of abnormal MRI results who did not have MS or possible MS, 70% had a clear alternative etiology for the abnormal MRI results, including migraine, age older than 50 years, other neurological disease, or hypertension.
CONCLUSIONS: A significant percentage of patients referred to a university-based MS center have little or no likelihood of having MS, and many have undiagnosed, untreated psychiatric illness or common conditions with abnormal brain MRI results. With respect to the diagnosis of MS, greater training of primary care professionals, neurologists, and radiologists is necessary.

PMID

 15824257 [PubMed - indexed for MEDLINE]







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A Clinical Approach to the Differential Diagnosis of Multiple Sclerosis.


                                                                  
  

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Abstract

The diagnostic criteria for multiple sclerosis (MS) rely on clinical, paraclinical, and radiographic findings of limited specificity. Many disorders mimic MS, and the decision of when to investigate an alternative diagnosis can be challenging. Reliance on extensive ancillary testing to exclude potential mimics, however, is unnecessary in most cases. Rather, recognition and rigorous interpretation of "classic" clinical and radiographic features of MS are often sufficient to establish the diagnosis. Misinterpretation of the clinical and radiographic diagnostic criteria for MS in the setting of more common diseases and syndromes and a lack of vigilance for "red flags" are important contributors to misdiagnosis. A clinical framework for the differential diagnosis of MS that emphasizes phenotypes atypical for MS and suggests diseases or syndromes in which they more commonly occur may be an important diagnostic guide for clinicians in contemporary practice.

PMID

 26112766 [PubMed - indexed for MEDLINE]




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The contemporary spectrum of multiple sclerosis misdiagnosis: A multicenter study.


                                                                  
  

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OBJECTIVE: To characterize patients misdiagnosed with multiple sclerosis (MS).
METHODS: Neurologists at 4 academic MS centers submitted data on patients determined to have been misdiagnosed with MS.
RESULTS: Of 110 misdiagnosed patients, 51 (46%) were classified as "definite" and 59 (54%) "probable" misdiagnoses according to study definitions. Alternate diagnoses included migraine alone or in combination with other diagnoses 24 (22%), fibromyalgia 16 (15%), nonspecific or nonlocalizing neurologic symptoms with abnormal MRI 13 (12%), conversion or psychogenic disorders 12 (11%), and neuromyelitis optica spectrum disorder 7 (6%). Duration of misdiagnosis was 10 years or longer in 36 (33%) and an earlier opportunity to make a correct diagnosis was identified for 79 patients (72%). Seventy-seven (70%) received disease-modifying therapy and 34 (31%) experienced unnecessary morbidity because of misdiagnosis. Four (4%) participated in a research study of an MS therapy. Leading factors contributing to misdiagnosis were consideration of symptoms atypical for demyelinating disease, lack of corroborative objective evidence of a CNS lesion as satisfying criteria for MS attacks, and overreliance on MRI abnormalities in patients with nonspecific neurologic symptoms.

CONCLUSIONS:   click to continue reading 





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MS and Your Brain: 10 Ways to Stay Sharp


                                                                  
  

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Set Up Your Mobile Memory

When MS clouds your thinking, the right tools can help you cut through the “brain fog” and stay on task and on time. One is probably within reach right now: your smartphone. Program the alarm to beep when you need to take medicine or get the clothes out of the dryer. Enter appointments in the calendar and set it to alert you before its time to go. And jog your memory with the phone's email or camera. Send yourself a note or snap a photo to recall something later.
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