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Thursday, May 18, 2017

Share your Thoughts about MS Research! / ¡Comparta su opinión sobre las investigaciones médicas!


                                                                  
  
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Take the MS Research Participation Survey!

(Por Favor:  a Ver en Español abajo del Inglés ) 

Dear  MS Friends

MS Views and News is interested in making sure that MS research benefits everyone. We are working with the MS Minority Research Engagement Partnership Network to understand how people with MS from different backgrounds and races think about medical research. The MS Minority Research Engagement Partnership Network is made up of people with multiple sclerosis, doctors, and other health leaders.

We want to understand how people with MS from different backgrounds and races think about participating in medical research. Have you ever thought about participating in a research study? What do you think is important to study? What would help you be a part of a study?

If you are at least 21 years old and have multiple sclerosis, we invite you to complete a survey 
 and share your thoughts on MS medical research. The survey should take around 15 minutes to complete. Everyone is invited!

Please copy and paste this link into your web browser to take the survey:  http://tinyurl.com/MSSurvey-MSVN (English)  

Thank you for your time! Please share this survey with any friends or family members with MS who may be interested.

Best Regards,

Stuart Schlossman
MS Views and News


P.S. For more information about this project, click here. If you have any questions, please send an email to msminorityresearch@acceleratedcure.org.

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Conteste la encuesta sobre los estudios de investigación de esclerosis múltiple 

MS Views and News quiere asegurarse de que los beneficios de los estudios de investigación médica sobre la esclerosis múltiple beneficien a todas las personas.

Estamos trabajando con el MS Minority Research Engagement Partnership Network para poder entender lo que opinan sobre las investigaciones médicas las personas de diferentes razas y origen étnico que padecen de esclerosis múltiple. El MS Minority Research Engagement Partnership Network, está compuesto de personas que padecen de esclerosis múltiple, doctores y otros líderes de la salud

Queremos entender lo que opinan sobre la participación en investigaciones médicas las personas de diferentes razas y origen étnico que padecen de esclerosis múltiple. ¿Alguna vez ha pensado en participar en un estudio de investigación? ¿Qué es necesario estudiar? ¿Qué le ayudaría a participar en una investigación?

Si usted es mayor de 21 años de edad y padece de esclerosis múltiple, le invitamos a que conteste esta encuesta y comparta su opinión sobre las investigaciones médicas de esclerosis múltiple. Contestar la encuesta sólo le tomará unos 15 minutos. ¡Todos están invitados!

Usted también puede copiar e insertar este link en su buscador para contestar la encuesta:  http://tinyurl.com/MSSurvey-MSVN-ES 

Gracias por su tiempo. Comparta esta encuesta con su familia y amigos que padecen esclerosis múltiple, quizás también estén interesados.

Saludos,

Stuart Schlossman
MS Views and News



P.D. Para más información sobre este proyecto haga clic aquí. Si tiene preguntas, envíenos un correo electrónico a: msminorityresearch@acceleratedcure.org.





OhioHealth hospital was the first to use the FDA Approved Drug, Ocrevus


                                                                  
  
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Medical staff at OhioHealth's Neuroscience Center at Riverside Methodist Hospital became the first in the world to treat patients with a new FDA drug called Ocrevus in the battle against multiple sclerosis.
The significance of the drug lies in how it can slow what's called primary progressive multiple sclerosis. The manufacturer, Genentech, says it is the first and only disease-modifying therapy for primary progressive multiple sclerosis or PPMS.
Read more




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Understanding Multiple Sclerosis (MS) in Children and Teens


                                                                  
  
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How does Stony Brook treat children and teens with MS?
Our National Pediatric MS Center has a multidisciplinary team known for its comprehensive approach. The program begins with a comprehensive multidisciplinary evaluation conducted over one or two days.
The evaluation includes:
A neurological assessment by a pediatric neurologist and MS specialist
• Review of medical records
• A neuropsychological evaluation and psychological assessment to evaluate the impact of MS on cognition, academic performance and emotional functioning
• An MRI may possibly be performed and evaluated with our neuro-radiologist to assess the disease
• Ophthalmology exam
• Individual psychological support for patients and their family members
• Neuropsychological evaluation
• Assistance, if needed, with school issues
• Nursing support
Once a diagnosis is made, the team develops a treatment plan, which is shared with the family, the child’s primary care physician and the local neurologist. We have access to disease modifying therapies including infusion medications. The plan may also include developing a relationship with the local healthcare providers in order to coordinate care near the home. In addition, the plan may include physical, occupational and speech therapy, counseling and more. Note that we work closely with the child’s primary care physician and local neurologist, and serve as consultants in the ongoing care of the patient. Educational materials regarding MS and its treatment are also provided. And, because of our role as National Pediatric MS Center, we have access to a worldwide network of international experts. We consult on difficult cases around the world and we are pleased to offer this high level expertise in our own community.

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Wednesday, May 17, 2017

3 Travel Tips for Easier Flying with MS


                                                                  
  
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It’s the time of year for travel here in the U.S. Graduations, weddings and vacations are on all of our calendars.
Air travel, in particular, can be a real pain for someone with a handicap such as multiple sclerosis. Security, aircraft seats and legroom are all becoming increasingly tighter. I’ve flown quite a bit for business and pleasure, and I’ve learned a few things that make my life a little easier at the airport and in flight. Following are a few tips for flying you can use, too:

1. Get some wheels

Airports, particularly those handling international flights, can be huge. Even if you can walk you really don’t want to walk from check-in to the plane.
I travel with a scooter that’s very light and also can be folded like a baby stroller. I drive the scooter right up to the aircraft door. Its battery is taken on board (FAA regulations require that it be stowed in the overhead) and the scooter is stowed with baggage. When we arrive, the scooter is returned to the aircraft door and off I go. Note: This works well with a lightweight scooter. If your scooter is larger and heavier, or if you’re in an electric wheelchair, you’ll need to check it at the gate before flying rather than at the plane door. The airline will use an onboard wheelchair to move you from the gate to your seat.
If you’re not disabled enough to use a scooter, arrange for a wheelchair. The airline will provide this from check-in to the gate and in reverse when you arrive. (There is no charge, though tips are accepted.) Request the chair when you make your reservation either via the airline’s website or with an agent on the phone. If you’re buying your ticket through a travel agent or third-party website, it’s a good idea to phone the airline three days ahead of your flight to ensure they know you need a chair. This notification also should be done if you’re traveling with a scooter or an electric chair.


Continue reading this checklist by clicking here





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Statins: How safe are they?


                                                                  
  
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Despite evidence that aims to quash controversy over the safety and effectiveness of statins, uncertainty remains. Is the safety of statins as debatable as some stories suggest, or is the controversy behind this group of medicines potentially harming more people than the drug itself? We find out.

[packet of statin tablets]

Cholesterol is essential to keep the body in working order. However, having high levels of "bad cholesterol," called low-density lipoprotein (LDL), in the blood can cause fatty deposits to build up in the arteries. Eventually, this buildup results in the arteries narrowing and hardening (a condition called atherosclerosis), which leads to a greater risk of heart attack and stroke.

Statins are a commonly prescribed medicine that helps to lower harmful levels of LDL cholesterol to mitigate the risks of cardiovascular disease.
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Relapsing-remitting MS: Alemtuzumab boosts outcomes for black patients


                                                                  
  
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May 6, 2017

Alemtuzumab improves long-term clinical and radiological outcomes in black patients with relapsing-remitting multiple sclerosis, according to data presented at the 69th Annual Meeting of the American Academy of Neurology in Boston, MA.


The new findings were seen in a small cohort of patients enrolled in phase III studies comparing alemtuzumab with subcutaneous interferon beta-1a (SC IFNB-1a), all of whom had relapsing-remitting multiple sclerosis (RRMS) and were either treatment-naïve at enrollment or had responded inadequately to prior therapy.

Importantly, the results in black patients were on a par with those previously reported in the overall study population, said principal investigator Dr. Annette Okai, from the Multiple Sclerosis Treatment Center of Dallas in Texas.
Black patients typically have more severe MS than white patients, characterized by more rapid disability accumulation, greater MRI lesion volumes, increased risk for secondary progression, accelerated retinal nerve fiber layer and ganglion cell/inner plexiform layer thinning, and the potential for a poorer response to disease-modifying therapies (DMTs).


READ MORE


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Food Intolerance Nutrition / Diet Bones / Orthopedics Public Health Lactose intolerance linked to lower vitamin D levels


                                                                  
  
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May 16, 2017

A new study suggests that people with a genetic intolerance to lactose should increase their intake of non-dairy foods rich in vitamin D, after finding that they are more likely to have low levels of the essential nutrient.
[Lactose-free foods]
Researchers have associated lactose intolerance with lower levels of vitamin D.
Study co-author Ahmed El-Sohemy, a professor of nutrition at the University of Toronto's Faculty of Medicine in Canada, and colleagues recently reported their findings in the Journal of Nutrition.
Lactose intolerance is defined as the body's inability to effectively digest lactose, a sugar found in dairy products, including milk, butter, and cheese.
The condition occurs when the small intestine fails to produce sufficient amounts of lactase, which is the enzyme that breaks down lactose.
READ MORE


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Monday, May 15, 2017

Survey: Misdiagnosis, Myriad Symptoms Common for Patients with Multiple Sclerosis


                                                                  
  
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May 12, 2017

A new survey of 5300 patients with multiple sclerosis in the United States suggested nearly half had to visit a physician at least 5 times before being correctly diagnosed with MS, and 4 in 10 were initially misdiagnosed with another condition.   The survey findings from Health Union, a Philadelphia-based healthcare information service also showed that MS patients regularly encountered wide array of symptoms, far beyond those typically discussed in most news coverage of the disease. 

Of the 42% of patients who were initially misdiagnosed, one quarter were told they were depressed. Another 15% were diagnosed with migraines and 14% were diagnosed with fibromyalgia. Psychiatric disorders, chronic fatigue syndrome, and Vitamin B-12 deficiency were also common incorrect diagnoses.   Tim Armand, president and co-founder of Health Union, said the survey helps paint a fuller picture of the hurdles people with MS must overcome.   “The results of this survey clearly show that people with MS struggle with a disease that impacts all aspects of their life in ways that many around them simply cannot see,” said Armand, in a press release.   

Armand said patient support networks could be integral in sharing information among patients and with also helping patients feel validated.   Findings pointed out that once patients received the correct diagnosis, nearly two-thirds (65%) start treatment within the first three months post-diagnosis. However, the survey also revealed that some patients are apprehensive about MS drugs. 

Forty-two percent of respondents said they were worried about the side effects of MS treatments, and 35% said they worried about the safety of disease-modifying therapies.   

Devin Garlit, a patient advocate with Health Union, said it took 13 years for him to find the right therapy.   “Finding the right treatment can be a difficult process that requires significant trial and error. You may have side effects with one, the next may not work well, and another may not be covered by insurance,” said Garlit, in the press release. - 

READ MORE


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Sunday, May 14, 2017

The impact of sexual dysfunction on the quality of life measured by MSQoL-54 in patients with multiple sclerosis


                                                                  
  
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Abstract


OBJECTIVE:

Sexual dysfunction (SD) is a common but often overlooked symptom in multiple sclerosis (MS). The aim of this study was to estimate the frequency, type, and intensity of SD in our patients with MS and to investigate its influence on all the domains of quality of life.

METHODS:

The study population comprised a cohort of 109 patients with MS (McDonald's criteria, 2001). SD was quantified by a Szasz sexual functioning scale. Health-related quality of life was measured by a disease-specific instrument MSQoL-54 (Serbian version).

RESULTS:

The presence of at least one symptom of SD was found in about 84% of the men and in 85% of the women. The main complaints in women were reduced libido, difficulties in achieving orgasm, and decreased vaginal lubrication; in men, the main complaints were reduced libido, incomplete erections, and premature ejaculation. In women, statistically significant negative correlations between the presence and level of SD and quality of life domains were reached for all subscales (P < 0.01), except for the Pain subscale (P = 0.112). In men, negative correlations were also observed for all domains, but they were statistically significant for physical health, physical role limitations, social function, health distress, sexual function, and sexual function satisfaction (P < 0.01). We found that the presence of all the analyzed types of sexual problems statistically significantly lowered scores on the sexual function and the sexual function satisfaction subscales in both men and women (P < 0.01). The most prominent impact on both domains was observed for the total loss of erection in men and for anorgasmia in women.

CONCLUSIONS:

Our results reveal that frequent occurrence of SD in MS patients prominently affects all aspects of their quality of life.
PMID:
 
18632783
 
DOI:
 
10.1177/1352458508093619


SOURCE


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Evaluation of sexual function in women at two stages of multiple sclerosis


                                                                  
  
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Abstract

PURPOSE:

In the present study, we aimed to evaluate the sexual function in patients with multiple sclerosis (MS) who were examined in two subgroups and compare the results to the control group with a validated questionnaire.

METHODS:

A total of 23 consecutive female MS patients divided into groups with relapsing-remitting MS (RRMS) and secondary progressive MS (SPMS) and 45 healthy control subjects were included into the study. The inclusion criteria were as follows: Definite MS, age between 18 and 60 years and an Expanded Disability Status Scale (EDSS) score of <8. The neurologic impairment, the disability and the independence of the patient, and cognitive performances were measured, and also the effect of MS is evaluated by EDSS.

RESULTS:

No statistically significant difference was found between two groups. FSFI scores in both groups were significantly lower than the control group. Domain scores for desire, arousal, orgasm, pain, lubrication and satisfaction measured between RRMS and SPMS patients showed no significant difference. Comparing each domain score for arousal, orgasm and satisfaction revealed significantly lower scores in RRMS and SPMS patients compared to control group.

CONCLUSIONS:

In this study, we detected statistically significant decrease in FSFI scores in two groups of MS compared to healthy controls. We could not define a difference in sexual function in different stages of MS in women and a statistically significant negative correlation between EDSS and FSFI scores in the two subgroups of MS.
PMID:
 
22669360
 
DOI:
 
10.1007/s00345-012-0891-4

SOURCE

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