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Friday, October 28, 2016

Multiple Sclerosis and Relationships


                                                                  
  


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Published on Sep 15, 2016
"Dropping the Mask: Relationships and MS" is the second of two crowdfunded videos focusing on the challenge of disclosing the multiple sclerosis (MS) diagnosis either in public or in an intimate relationship.

Find the first video here:

https://www.youtube.com/watch?v=W3Amh...

The Dropping the Mask mini-series is an initiative of the European Multiple Sclerosis Platform’s (EMSP) Young People’s Network.

These videos demonstrate the desire of our young and vibrant MS community to combat stigma and promote patient empowerment.

Dropping the Mask was made possible by a successful crowdfunding campaign in which 46 donors worldwide contributed the total sum of 6,000 euros to the final budget.

For more information on MS, EMSP and our projects visit www.emsp.org.

Find out more about EMSP's Young People's Network here: http://www.emsp.org/wp-content/upload....





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Disclosing Your MS to Friends and Family


                                                                  
  


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Published on Sep 14, 2016
"Dropping the Mask: Disclosure and MS" is the first of two crowdfunded videos focusing on the challenge of disclosing the multiple sclerosis (MS) diagnosis either in public or in an intimate relationship.

Find the second video here:

https://www.youtube.com/watch?v=NaByK...

The Dropping the Mask mini-series is an initiative of the European Multiple Sclerosis Platform’s (EMSP) Young People’s Network.

The videos demonstrate the desire of our young and vibrant MS community to combat stigma and promote patient empowerment.

Dropping the Mask was made possible by a successful crowdfunding campaign in which 46 donors worldwide contributed the total sum of 6,000 euros to the final budget.

For more information on MS, EMSP and our projects visit www.emsp.org.

Find out more about EMSP's Young People's Network here: http://www.emsp.org/wp-content/upload....






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Providing educational information, resources and services for those affected by MS


a Non MS related story: Powerful stem cell patient advocate story


                                                                  
  

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Dear Friends

I wanted to share something with you that I hope you will find as inspiring and moving as I did. It’s a story from ourt CIRM blog about an extraordinary woman who refused to let going blind stop her from living her life to the full. And now she’s part of a clinical trial that is helping restore some of her vision.

It’s a testament to the important work that researchers like Dr. Henry Klassen are doing, but more importantly it’s a testament to the power of the human spirit.

I hope you enjoy it.


Cheers,

Kevin  McCormack
CALIFORNIA INSTITUTE FOR REGENERATIVE MEDICINE

Sr. Director Public Communications & Patient Advocate Outreach
1999 Harrison St, Suite 1650, Oakland, CA 94612  Phone: 510-340-9147 or cell 415-361-2903









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Thursday, October 27, 2016

More to know of OCREVUS (Ocrelizumab),


                                                                  
  

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OCREVUS (generic name Ocrelizumab) is a humanized monoclonal antibody under clinical investigation and development by the Swiss pharmaceutical company Roche as a potential treatment for people with multiple sclerosis (MS). The therapy is targeted against mature B-lymphocytes with CD20 markers on their surface, giving the drug an immunosuppressive function that might reduce the rates of immune system attacks on its own myelinated neurons, the main pathogenesis in the disease. OCREVUS is not yet an approved therapy, but it has shown promise in treating both relapsing forms of multiple sclerosisand primary progressive multiple sclerosis, a disease form with no approved treatments to date.

How Ocrelizumab Works

Ocrelizumab, an anti-CD20 monoclonal antibody, targets mature B-cells. Almost 95 percent of the B-cell population has these antigenic epitopes after maturation and does not shed them, which is what makes it a potent marker for therapeutic purposes. It is believed that these CD20-positive B-cells target axons and myelin sheaths of healthy neurons, initiating a cascading series of immune reactions that lead to MS and disability in patients. Preclinical studies have shown that ocrelizumab binds to specific B-cells with CD20 markers but not to stem cells and plasma cells, preserving vital immune functions within the host.


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Do Brain-Training Exercises Work?


                                                                  
  

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In this Medical News Minute, developed exclusively for Neurology Times, Dr. Bobby Lazzara discusses a studyreviewing brain-training literature. Researchers established a set of best study practices which they applied to the 374 cases reviewed to determine quality of evidence.


Watch video by clicking here



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Providing educational information, resources and services for those affected by MS

Less Common MS Symptoms

Recognizing Less Common Symptoms

Every MSer knows all about the most common symptoms of MS — walking difficulties, balance problems, bladder and bowel emergencies as well as the omnipresent fatigue. But what about the less common symptoms? How does the average MSer experience the less well-known symptoms of MS?
With a disease that affects every sufferer so differently, how can we even positively identify what a “less common” symptoms is? Is a less common symptom something that most MSers don’t experience, or is it something that lots of MSers experience less frequently?
There are also lots of symptoms that MSers ask their neurologists about only to be answered by a baffled shrug and a denial that the symptom described can possibly be related to MS at all.
Let’s look at the less common symptoms more closely and think about these questions.

Speech Difficulties

Speech problems such as loss of volume (dysphonia) and slurring (dysarthria) occur in 25–40% of people with MS. These problems can occur particularly in the later stages of the disease or during periods of fatigue.
I don’t get these symptoms very often, but I do experience them. For me they are triggered when I have a combination of physical and cognitive fatigue. When I’ve been at work all day, for example, I can feel a strange tingling in my lips and mouth which make physically forming the words more difficult.
I can also have problems finding the right words or forming a sentence in my head if I feel cognitive fatigue. I find myself staring at my children or husband when they’ve asked me something, unable to register what they’re saying and form an intelligent response!
Luckily these symptoms don’t last long and rest is the best way to reboot my brain and become articulate again. The loss of speech terrifies me as I’ve always been a talker — my dad used to say they’ll need to beat my voice box to death with a stick after I die, but that’s another story!

Swallowing Problems

Also called dysphagia, these problems are caused by damage to the numerous nerves that control the throat and mouth. This is another lesser-known symptom that I’ve experienced, but not very often and not for very long. I remember experiencing this before I was diagnosed and not knowing what on earth was going on. Usually when I try to swallow the second time it’s OK, but I imagine this would be terrifying if it was a permanent symptom.

Tremor

This can occur in any part of the body and can be experienced as uncontrollable shaking. It happens due to damaged areas along the complex pathways that control how we coordinate tiny movements.
I’ve started getting this lately when I put my left foot on the footrest of my scooter. My foot shudders for a few moments and then is still. It can be alarming and makes me self-conscious when people notice.

Breathing Problems

Respiration problems occur when chest muscles have been severely weakened by damage to the nerves that control the muscles. I’ve never been affected by breathing problems as they tend to occur at the very late stages of progressive MS. Luckily no two people are the same, and severe forms of MS are much less common than the milder forms of the disease.

Itching

When I asked the members of MSpals on Facebook about less common symptoms, many of them mentioned itching. Pruritus or itching is one of the abnormal sensations like pins and needles or burning that many MSers experience. One MSpal described a patch of skin on her arm that itches so badly it’s woken her up in the night. Her neurologist told her it wasn’t an MS symptom so maybe it‘s not common enough for medical professionals to know about

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Dizziness, Vertigo and MS

Dizziness is a common symptom of MS. People with MS may feel off balance or lightheaded. Much less often, they have the sensation that they or their surroundings are spinning — a condition known as vertigo. These symptoms are due to lesions — damaged areas — in the complex pathways that coordinate visual, spatial and other input to the brain needed to produce and maintain equilibrium.

Usually, these symptoms respond to an anti motion-sickness drug such as meclizine (Antivert®, Bonine® or Dramamine®), the newer skin patches that deliver scopolamine, or the anti-nausea drug ondansetron (Zofran®). Consult your healthcare team if dizziness or vertigo becomes bothersome or lasts a long time; in severe cases, a short course of corticosteroids may be prescribed.
Other conditions that may cause dizziness include middle ear inflammation and benign tumors of the acoustic nerve that connects the ear and the brain.

Wednesday, October 26, 2016

Determined Father With Multiple Sclerosis Uses Exoskeleton to Walk Daughter Down Wedding Aisle


                                                                  
  

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(NEW YORK) —  A 54-year-old man with multiple sclerosis recently awed 200 guests at his daughter’s wedding, where they saw him walk for the first time in over 20 years.
The moment was “timed perfectly,” said 28-year-old bride Elise Holland.
She explained that her father, Scott Holland, had been sitting and hiding behind a partition in the Manayunk, Philadelphia, venue before the ceremony started. But once she arrived, Scott Holland suddenly rose and emerged from behind the partition.
Then, donning an exoskeleton attached to his back, Scott Holland walked his daughter down the aisle. She was smiling and teary-eyed the whole way.
“The whole room was just taken aback and everyone was in tears,” Elise Holland told ABC News. “It completely caught everyone off-guard since no one except my family and I had known he was going to walk the aisle.”
The bride said the incredible feat was the culmination of over four months of rigorous physical therapy.
 “Once he had the idea that he could with an exoskeleton in his head, he just went and ran with it,” Elise Holland said with a laugh. “‘Tenacious’ is definitely one word to describe him, and so is stubborn … definitely stubborn.”
Continue





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Umbilical Cord Stem Cells Work to Restore Immune System Balance in Early Study


                                                                  
  

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October 21, 2016
Damaging immune system defects seen in patients with multiple sclerosis (MS) can be repaired using a simple stem cell approach, according to a new study by researchers in China.
Although the origin of MS remains elusive, immune system attacks against myelin is a known hallmark of the disease. In MS patients, immune system cells called T-cells penetrate the brain and react against the myelin coating that protects and supports neurons. Essentially, the T-cells’ activity is  unregulated, something usually mediated by T regulatory cells (Tregs), and contributes to their abnormal aggressiveness.
One possible way to restore T-cell regulation is by using mesenchymal stem cells or MSCs (stem cells are immature cells that can become any type of cell in the body). MSCs are a type of stem cell found in the bone marrow, and have been shown to stimulate the presence of Tregs, thereby controlling the activity of T-cells.
The human umbilical cord has stem cells equivalent to MSCs, called UC-MSCs — these cells are more stable, induce lower immune responses, and have higher expansion ability compared to MSCs.
To understand whether these umbilical cord stem cells could restore the regulation of the immune system in MS, researchers cultured UC-MSCs together with immune system cells present in the blood of MS patients and healthy subjects.
Continue




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RedHill BioPharma Awaits Patent for RHB-104, Potential MS Treatment, from Japan


                                                                  
  

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RedHill Biopharma recently announced that it has received a Notice of Allowance from the Japan Patent Office for a new patent covering RHB-104 as a potential treatment of multiple sclerosis (MS). Once granted, the patent will be valid until 2032.
The European Patent Office also recently approved a patent application for the drug with this indication, the company said in a press release.
RHB-104 is a novel oral capsule formulation of a therapeutic combination of antibiotics that has potent intracellular, anti-mycobacterial, and anti-inflammatory properties. The capsules consist of 95 mg of clarithromycin, 45 mg of rifabutin, and 10 mg of clofazimine. RHB-104, originally developed for the treatment of Crohn’s disease and now in a clinical trials for the condition, is also being evaluated to treat relapsing-remitting multiple sclerosis (RRMS), as its anti-inflammatory and neuroprotective properties may dampen the effects of the disease.
The Phase 2a proof-of-concept CEASE-MS (NCT01717664) trial is assessing the efficacy and safety of a fixed dose combination of RHB-104 as add-on therapy to interferon beta-1a in patients with RRMS. Participants were treated with RHB-104 plus interferon beta-1a for 24 weeks, and then assessed for an additional 24 weeks in which they received only interferon beta-1a.





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Wheat Proteins Known as ATIs May Worsen Inflammation in People with MS


                                                                  
  

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A group of proteins found in wheat can cause symptoms of such inflammatory health conditions as multiple sclerosis (MS), asthma and rheumatoid arthritis to worsen, and may also promote gluten sensitivity, according to researchers at Johannes Gutenberg University in Germany.
These findings, recently presented at United European Gastroenterology (UEG) Week 2016, turn attention away from one group of proteins — gluten, associated with digestive problems — to another, known as amylase-trypsin inhibitors (ATIs).
ATIs compose up to 4 percent of wheat proteins, and are powerful enhancers of immune reactions in the intestine and other organs, such as the lymph nodes, kidneys, spleen, and brain. These proteins can also exacerbate symptoms of MS, rheumatoid arthritis, asthma, lupus, non-alcoholic fatty liver disease, and inflammatory bowel disease.
“As well as contributing to the development of bowel-related inflammatory conditions, we believe that ATIs can promote inflammation of other immune-related nonchronic conditions outside of the bowel,” Professor Detlef Schuppan, the lead researcher, said in a news release. “The type of gut inflammation seen in non-coeliac gluten sensitivity differs from that caused by coeliac disease, and we do not believe that this is triggered by gluten proteins. Instead, we demonstrated that ATIs from wheat, that are also contaminating commercial gluten, activate specific types of immune cells in the gut and other tissues, thereby potentially worsening the symptoms of pre-existing inflammatory illnesses.”




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Video: Women's Health in Multiple Sclerosis (MS) - Wellness, Nutrition and more...





                                                                  
  


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Patricia Pagnotta - ARNP, MSN, CNRN, MSCN
Discusses: Nutrition, Wellness, Bladder, Family planning/reproductive health in relation to Role Adaptions, Relationships ( family, work, friends) and Self-Aspects in relation to MS





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Correction of Footdrop Due to Multiple Sclerosis Using the STIMuSTEP Implanted Dropped Foot Stimulator


                                                                  
  

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Paul N. Taylor PhDIngrid A. Wilkinson Hart PhDMansoor S. Khan ,FRCS(Plast)Diana E.M. Slade-Sharman FRCS(Plast)
From the Department of Clinical Science and Engineering (PNT, IAWH) and the Department of Plastic Surgery (MSK, DEMS-S), Salisbury District Hospital, Salisbury, Wiltshire, UK.
Correspondence: Paul N. Taylor, PhD, Salisbury District Hospital, Salisbury, Wiltshire SP2 8BJ, United Kingdom; e-mail: .
Note: Supplementary material for this article is available on IJMSC Online at ijmsc.org.

Background: Footdrop is a significant problem in multiple sclerosis, reducing the safety and efficiency of walking. Functional electrical stimulation (FES) can produce dorsiflexion, correcting footdrop. The purpose of this retrospective analysis of clinical study data was to compare the effect of external and implanted FES devices for the correction of footdrop.
Methods: External FES was used for a minimum of 6 months before implantation. Walking performance was assessed using 10-m walking speed, 3-minute walking distance, the Physiological Cost Index, and health- and device-related quality of life and device-use questionnaires. Assessments were made before implantation and a mean (SD) of 128 (24) days after surgery, with additional walking speed measurements at 3 years.
Results: Twenty-three people with multiple sclerosis received the STIMuSTEP implant. Both devices enabled statistically significant increases in walking speed and walking distance, with a strong trend toward a reduced Physiological Cost Index, indicating that walking required less effort (P = .07). Both devices improved device-related quality of life. Walking speed gain with FES was maintained at 3 years. Three implants failed after falls, and there was one case of neuropraxia. The implant was used more days per week and was quicker to put on each day than the external FES device.
Conclusions: The STIMuSTEP implanted dropped foot stimulator is an effective long-term intervention for the correction of footdrop.
© 2016 Consortium of Multiple Sclerosis Centers.
SOURCE



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Exercise Training in Progressive Multiple Sclerosis


                                                                  
  

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A Comparison of Recumbent Stepping and Body Weight–Supported Treadmill Training

Lara A. Pilutti PhDJohn E. Paulseth MDCarin Dove MDShucui Jiang MD, PhDMichel P. Rathbone MD, PhDAudrey L. Hicks PhD
Background: There is evidence of the benefits of exercise training in multiple sclerosis (MS); however, few studies have been conducted in individuals with progressive MS and severe mobility impairment. A potential exercise rehabilitation approach is total-body recumbent stepper training (TBRST). We evaluated the safety and participant-reported experience of TBRST in people with progressive MS and compared the efficacy of TBRST with that of body weight–supported treadmill training (BWSTT) on outcomes of function, fatigue, and health-related quality of life (HRQOL).
Methods: Twelve participants with progressive MS (Expanded Disability Status Scale scores, 6.0–8.0) were randomized to receive TBRST or BWSTT. Participants completed three weekly sessions (30 minutes) of exercise training for 12 weeks. Primary outcomes included safety assessed as adverse events and patient-reported exercise experience assessed as postexercise response and evaluation of exercise equipment. Secondary outcomes included the Multiple Sclerosis Functional Composite, the Modified Fatigue Impact Scale, and the Multiple Sclerosis Quality of Life–54 questionnaire scores. Assessments were conducted at baseline and after 12 weeks.
Results: Safety was confirmed in both exercise groups. Participants reported enjoying both exercise modalities; however, TBRST was reviewed more favorably. Both interventions reduced fatigue and improved HRQOL (P ≤ .05); there were no changes in function.
Conclusions: Both TBRST and BWSTT seem to be safe, well tolerated, and enjoyable for participants with progressive MS with severe disability. Both interventions may also be efficacious for reducing fatigue and improving HRQOL. TBRST should be further explored as an exercise rehabilitation tool for patients with progressive MS.
© 2016 Consortium of Multiple Sclerosis Centers.

Source




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