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Wednesday, October 16, 2019

Breathing exercises

If we are not very active, we tend to breathe less deeply and therefore less efficiently. Breathing exercises also play a part in improving our posture and exercising both the diaphragm and abdominal muscles.

Fun with breathing exercises

You can also have fun with breathing exercises - try singing or whistling! It doesn't matter if you're not very good! If nothing else it may make you laugh at your efforts and laughter is proven therapy for us all!
If you can't whistle or sing, then just try a long slow blow. See how long you can take to blow a lung full of air out, counting in your head. If you can get to 20 or 30 you're doing fine!
These exercises can be done at any time of day. Many of them could be done while watching TV. It is useful to use something as a trigger to remind you to do some of the exercises. It is also sensible to intersperse the breathing exercises with the others so that you don't get giddy!
If you have problems/concerns, talk to a physiotherapist.

Breathing exercises

Each exercise can be downloaded as a pdf, allowing you to build up a programme to meet your own needs.

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Why You Should Tell Your Neurologist If You Feel Depressed

October 2019

While an estimated 17.3 million (or 7.1 percent of) adults in the United States have had at least one major depressive episode, we know the incidence is much higher in people with certain neurologic conditions. Poststroke depression, for example, affects more than half of people who've had a stroke. This is why, for National Depression Education & Awareness Month this October, we have included our first feature on this challenging symptom.

In our story "Neurologic Conditions Can Lead to Depression—Here’s How to Manage It," one of our experts notes that neurologists like me may focus more on the neurologic condition itself and miss or dismiss depressive symptoms. That's why telling us how you feel is so important. If, for instance, your depression is triggered by a prescription medication, your doctor may be able to replace it with an equally effective treatment that's less likely to affect your mood. In fact, medications for high blood pressure, gastroesophageal reflux disease, pain, anxiety, and hormonal issues are among the more than 200 drugs associated with depression. Moreover, if you are taking three or more medications, your risk of depression increases. Telling your doctors will also enable them to check for conditions associated with depression, such as thyroid or other endocrinologic disease, nutritional problems or vitamin deficiencies, infections, and autoimmune disorders. Once you are diagnosed with depression and your doctor has been able to rule out sources like these, he or she will likely refer you to a psychiatrist, who may prescribe different drugs, counseling programs, and other strategies for coping.

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Tuesday, October 15, 2019

Sex chromosome contributions to sex differences in multiple sclerosis susceptibility and progression

+January 2018

BACKGROUND:  Why are women more susceptible to multiple sclerosis, but men have worse disability progression? Sex differences in disease may be due to sex hormones, sex chromosomes, or both.


Determine whether differences in sex chromosomes can contribute to sex differences in multiple sclerosis using experimental autoimmune encephalomyelitis.


Sex chromosome transgenic mice, which permit the study of sex chromosomes not confounded by differences in sex hormones, were used to examine an effect of sex chromosomes on autoimmunity and neurodegeneration, focusing on X chromosome genes.


T-lymphocyte DNA methylation studies of the X chromosome gene Foxp3 suggested that maternal versus paternal imprinting of X chromosome genes may underlie sex differences in autoimmunity. Bone marrow chimeras with the same immune system but different sex chromosomes in the central nervous system suggested that differential expression of the X chromosome gene Toll-like receptor 7 in neurons may contribute to sex differences in neurodegeneration.


Mapping the transcriptome and methylome in T lymphocytes and neurons in females versus males could reveal mechanisms underlying sex differences in autoimmunity and neurodegeneration.


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X-tra X (chromosome): An escape to autoimmunity

First published August 12, 2019 - 
Identifying the factors driving disease disparities between males and females with multiple sclerosis (MS) holds great promise for deciphering immunopathogenic disease mechanisms. In this issue of JCI, Itoh et al. explore the basis for sexual dimorphism in autoimmunity, specifically in MS. Using the experimental autoimmune encephalomyelitis (EAE) model of MS, which recapitulates CD4+ T cell–dependent disease, the authors examined the contribution of Kdm6a, a histone demethylase gene known to escape X inactivation. Conditional knockout in CD4+ T cells revealed Kdm6a involvement with a collection of immunologic processes having the potential to skew immunity toward inflammatory responses. This study concisely shows the value of X chromosome gene expression in T cell regulation of autoimmunity and the relevance of Kdm6a in the pathogenesis of EAE as a model of MS.

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Monday, October 14, 2019

June Halper on How Supportive Team Care Can Help Patients With MS as Their Disability Increases

While there may be negative connotations attached to the term “palliative care,” this type of care could be called “supportive team care” to better express its potential to educate and care for patients with chronic illnesses such as multiple sclerosis (MS), said June Halper, MSN, APN-C, MSCN, FAAN, chief executive officer, Consortium of Multiple Sclerosis Centers.

Click banner to listen to a description of "palliative care" to be known as: "Supportive Team Care"

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Dr Daniel Kantor Highlights MS Treatments and What Is in the Pipeline

Sept 2019

The field of treatments for multiple sclerosis (MS) has grown quickly in the last 30 years, but the next new class of therapies probably won’t come to market for at least another year and a half, said Daniel Kantor, MD, president of Kantor Neurology.

Are there any particular multiple sclerosis trials that you’re keeping an eye on?

The field of MS is exciting. We’ve gone from having zero disease-modifying therapies in 1992, to our first medication in 1993, to, now, having 17 separate products. It’s amazing the leap forward. We now have 14 branded products, we have 2 unbranded generics, and 1 branded generic. That’s an amazing leap forward. That’s faster than anything in neurology, and frankly, faster than most things in medicine.

Click the above banner to listen to Dr. Kantor's response

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Friday, October 11, 2019

June Halper Describes the Team-Based Approach Underlying the Consortium of MS Centers

August 2019

The Consortium of Multiple Sclerosis (MS) Centers is unique in that it places physicians and other healthcare professionals on a level playing field while elevating the patient’s voice to be the most important on the team, explained June Halper, MSN, APN-C, MSCN, FAAN, chief executive officer, Consortium of Multiple Sclerosis Centers.

Click to listen to June Halper as she describes a Team-based approach to care

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Tuesday, October 8, 2019

Pharmacy Benefit Managers and Their Role in Drug Spending - Are they the Good Guys or Bad Guys

April 2019

Pharmacy benefit manager have a significant behind-the-scenes impact in determining drug costs and patients’ access to medications. Some experts think pharmacy benefit managers need to move their business model away from securing rebates from drugmakers and toward encouraging better value in pharmaceutical spending.

What are pharmacy benefit managers?

Pharmacy benefit managers, or PBMs, are companies that manage prescription drug benefits on behalf of health insurers, Medicare Part D drug plans, large employers, and other payers. By negotiating with drug manufacturers and pharmacies to control drug spending, PBMs have a significant behind-the-scenes impact in determining total drug costs for insurers, shaping patients’ access to medications, and determining how much pharmacies are paid.1 PBMs have faced growing scrutiny about their role in rising prescription drug costs and spending.
What role do PBMs play in how much we spend on prescription drugs?
PBMs operate in the middle of the distribution chain for prescription drugs. That’s because they:
  • develop and maintain lists, or formularies, of covered medications on behalf of health insurers, which influence which drugs individuals use and determine out-of-pocket costs
  • use their purchasing power to negotiate rebates and discounts from drug manufacturers
  • contract directly with individual pharmacies to reimburse for drugs dispensed to beneficiaries.2
The federal Centers for Medicare and Medicaid Services found that PBMs’ ability to negotiate larger rebates from manufacturers has helped lower drug prices and slow the growth of drug spending over the last three years. But PBMs may also have an incentive to favor high-priced drugs over drugs that are more cost-effective. Because they often receive rebates that are calculated as a percentage of the manufacturer’s list price, PBMs receive a larger rebate for expensive drugs than they do for ones that may provide better value at lower cost. As a result, people who have a high-deductible plan or have copays based on a drug’s list price may incur higher out-of-pocket costs.3

What’s the controversy over the rebates PBMs receive from drug companies?   Click here to read

 Role of a Pharmacy Benefit Manager in Providing Services and Flow of Funds for Prescription Drugs
           Click here to continue reading


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Monday, October 7, 2019

Association Between Serum Neurofilament Light Chain Levels and Long-term Disease Course Among Patients With Multiple Sclerosis Followed up for 12 Years

Question  Can serum neurofilament light chain measurements serve as a reliable biomarker of disease worsening for patients with multiple sclerosis?
Findings  In this cohort study of 607 patients with multiple sclerosis, serum neurofilament light chain levels increased significantly faster in those experiencing disability worsening than in those who remained clinically stable. Serum neurofilament light chain level was associated with brain fraction loss, whereas this was less the case for clinical outcomes such as relapses or EDSS worsening.
Meaning  The association of serum neurofilament light chain level with changes in relevant clinical and neuroimaging outcomes in multiple sclerosis was confirmed, strengthening the potential of this biomarker as a measure of disease activity in multiple sclerosis; however, the clinically useful prognostic value of serum neurofilament light chain level for the individual patient was limited.
Importance  Blood sample–based biomarkers that are associated with clinically meaningful outcomes for patients with multiple sclerosis (MS) have not been developed.
Objective  To evaluate the potential of serum neurofilament light chain (sNFL) measurements as a biomarker of disease activity and progression in a longitudinal MS data set.
Design, Setting, and Participants  Single-center, ongoing, prospective observational cohort study of 607 patients with MS from the longitudinal EPIC (Expression, Proteomics, Imaging, Clinical) study at the University of California, San Francisco from July 1, 2004, through August 31, 2017. Clinical evaluations and sample collection were performed annually for 5 years, then at different time points for up to 12 years, with a median follow-up duration of 10 (interquartile range, 7-11) years. Serum NFL levels were measured using a sensitive single molecule array platform and compared with clinical and magnetic resonance imaging variables with the use of univariable and multivariable analyses.
Main Outcomes and Measures  The main outcomes were disability progression defined as clinically significant worsening on the Expanded Disability Status Scale (EDSS) score and brain fraction atrophy.
Results  Mean (SD) age of the 607 study participants at study entry was 42.5 (9.8) years; 423 (69.7%) were women; and all participants were of non-Hispanic European descent. Of 3911 samples sequentially collected, 3904 passed quality control for quantification of sNFL. Baseline sNFL levels showed significant associations with EDSS score (β, 1.080; 95% CI, 1.047-1.114; P < .001), MS subtype (β, 1.478; 95% CI, 1.279-1.707; P < .001), and treatment status (β, 1.120; 95% CI, 1.007-1.245; P = .04). A significant interaction between EDSS worsening and change in levels of sNFL over time was found (β, 1.015; 95% CI, 1.007-1.023; P < .001). Baseline sNFL levels alone were associated with approximately 11.6% of the variance in brain fraction atrophy at year 10. In a multivariable analysis that considered sex, age, and disease duration, baseline sNFL levels were associated with 18.0% of the variance in brain fraction atrophy at year 10. After 5 years’ follow-up, active treatment was associated with lower levels of sNFL, with high-potency treatments associated with the greater decreases in sNFL levels compared with platform therapies (high-potency vs untreated: β, 0.946; 95% CI, 0.915-0.976; P < .001; high-potency vs platform: β, 0.972; 95% CI, 0.948-0.998; P = .04).

Conclusions and Relevance  This study found that statistically significant associations of sNFL with relevant clinical and neuroimaging outcomes in MS were confirmed and extended, supporting the potential of sNFL as an objective surrogate of ongoing MS disease activity. In this data set of patients with MS who received early treatment, the prognostic power of sNFL for relapse activity and long-term disability progression was limited. Further prospective studies are necessary to assess the assay’s utility for decision-making in individual patients.

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Learn about Neurofilament light polypeptide

Neurofilament light polypeptide (NFL), also known as neurofilament light chain, is a neurofilament protein that in humans is encoded by the NEFL gene.[5][6] Neurofilament light chain is a biomarker that can be measured with immunoassays in cerebrospinal fluid and plasma and reflects axonal damage in a wide variety of neurological disorders.[7][8] It is a useful marker for disease monitoring in amyotrophic lateral sclerosis,[9] multiple sclerosis,[10] Alzheimer's disease,[11][12] and more recently Huntington's disease.[13]

Read more

MS & Socializing: A Few Things to Remember


By Devin Garlit · September 17, 2019

While a disease like multiple sclerosis has a different effect on everyone it afflicts, universally it has an impact on your ability to socialize. Perhaps you are disabled and can’t drive, so you are unable to leave the house much. Maybe you are still doing fairly well, but fatigue still ends your day early. Maybe you can even hold down a job and survive but you aren’t well enough to actually thrive. When it comes to MS, there are many scenarios that can inhibit our ability to socialize with others. Like many things I write about, I struggle in this area as well, however, I do have some tips to help improve your chances of experiencing that crucial time with other human beings.

MS &#038; Socializing: A Few Things to Remember

Remember it’s important
You’ve probably heard the phrase “humans are social creatures” a number of times in your life.  There’s a lot of truth to it, humans have evolved to be around other humans. Even the most introverted among us require time with other people. The psychological effects of not allowing humans to interact with others can be severe (you can simply Google “solitary confinement” and see how it is often viewed as cruel and unusual punishment). I could go into depth about why you need to see and interact with other human beings, but if I did, this article would be way too long. Besides, I’m pretty sure most people will agree on its importance. No matter how introverted you are, you have to remember that it’s beneficial to be amongst other people. No matter how different you feel they may be from them. People with chronic illness have a tendency to isolate themselves, and you have to consciously fight against that. It’s important to think back to the times you have been around people that it felt good, focus on those moments to help get yourself over the hump.


I’ve written before how I tend to thrive more when I follow a routine and go to familiar places. Getting out is difficult for me, so I often set aside a standard day every week to get out. I have a set plan to go to a local bar and play trivia with a group of friends. I know I’m doing it every week, so my body is prepared for it.  It’s also at the same place each time, so I’m familiar with it, I know how the temperatures run, I know where the bathrooms are, etc. Familiarity makes getting out with a chronic illness much easier.  Even if you aren’t going to a set event every week, simply going to a place you know well can be of huge comfort, whether you realize it or not. If someone suggests meeting at one place, and you are uneasy, suggest somewhere you know a bit better. To go along with the planning theme, budget the appropriate rest time before and after activities. Knowing you have that time set aside can be very helpful.


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Sunday, October 6, 2019

MS Symptoms - Learn to recognize and manage the possible symptoms of MS, which range from mild to severe.

MS Keywords:
   Fatigue; Pain; Gait (Walking), Cognition; Bladder, Bowel, Vision, Sexual Problems and Depression

MS symptoms are variable and unpredictable. No two people have exactly the same symptoms, and each person’s symptoms can change or fluctuate over time. One person might experience only one or two of the possible symptoms while another person experiences many more.

Explore the list below to find more information about the symptoms you or someone you care about may experience. Most of these symptoms can be managed very effectively with medication, rehabilitation and other management strategies. 
Effective symptom management by an interdisciplinary team of healthcare professionals is one of the key components of comprehensive MS care.
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Pregnancy & MS - Considerations before starting a family

Pregnancy and MS
When I was diagnosed with multiple sclerosis (MS), I was 26 years old and newly married. I was working full time and had just started graduate school. I remember wondering early on in my diagnosis if I would ever be able to have a child. Some of the things that ran through my mind were:
    • Could I have a baby?
    • Should I have a baby?
    • Would I be a good parent?
    With so much going on in my life, my husband and I decided that we would hold off on having a child until I was almost finished with graduate school. We used this time to seek out answers to the questions that I had.
    It took a little bit of searching, but I was able to connect with someone who had a baby after her diagnosis of MS. Finding this person was not easy. I started by emailing support group leaders and asking them if they knew anyone. I had to put myself out there and ask, but I am so thankful that I did. Connecting with someone who understood my concerns and knew what I was going through was extremely helpful.
    After doing some research, I found an MS specialist who was able to address some of my concerns. The first question I asked him was whether I could have a baby. He was very helpful and willing to answer all my questions. Some of the other questions I asked were:
      • How will my current therapy affect my ability to get pregnant?
      • Will my MS symptoms affect my pregnancy?
      • What happens if I have an MS relapse immediately after my pregnancy?
      Being Pregnant With MS
      In my final semester of graduate school, I became pregnant. My husband and I were overjoyed. My pregnancy was very positive. I embraced the emotions and moments of that time. We took pictures every week of my growing belly and settled on the name Jacob when we found out we were having a boy.
      Nine months later, my husband and I welcomed Jacob into the world. We were so happy. We finally had the little family we planned.

      Below are some tips based on my experience:

      • Planning : My husband and I talked a lot about what parenting would be like and how we could do it together. A lot of these conversations were discussed before I got pregnant and during my pregnancy. Planning early helped alleviate some of our concerns
      • Co-parenting : My husband and I decided early on that we would be 50/50 parents. This meant we would alternate diaper changes, baths, etc. Sometimes we would do these things together, but it helped that we were sharing responsibilities. Going into parenting this way was very important for us.
      • Addressing MS symptoms: I was worried that my symptoms would get in the way of my parenting duties. But having a strong support system was helpful and made me feel very comfortable. At times, my husband would do extra things so I could manage my fatigue. We knew if I addressed my fatigue, I might have more energy to do some of the things with our son that I really wanted to do
      • My husband and I also came up with a feeding schedule. He is a night owl, and I need extra sleep. I fed our son any time up to 9:30 PM . He would feed our son any time after that until 4 AM . I would then feed Jacob in the early hours of the morning. I cannot express how helpful this system was for us
      • Working with your healthcare team: My healthcare team was there to help me before, during, and after my pregnancy. I made sure that I shared any concerns I had with my healthcare provider. For example, my neurologist was very helpful with giving me information about starting back on my relapsing MS medication. In addition, I made sure to regularly touch base with him after having Jacob. My OBGYN was very helpful to talk with when I was worried about not being able to breastfeed. Jacob’s pediatrician even became a part of my team too. He gave me good advice on parenting, and provided tips for taking care of a baby while living with a chronic illness. Find tips for connecting your healthcare team here
      • Breastfeeding : When I had Jacob, I was advised that I should not breastfeed when starting back on my treatment a few weeks after delivery. I was sad that I would miss out on breastfeeding, but I felt so thankful to be having a baby. Formula feeding offered a positive opportunity for my husband as he was able to help out quite a bit. This helped with their bonding as my husband settled into becoming a new dad. Breastfeeding is a personal choice. Be sure to talk to your healthcare provider about whether breastfeeding may be right for you and your child
      Keep in mind, everyone's situation is different and this is just my own personal experience. Pregnancy may not be appropriate or possible for everyone. Please talk to your healthcare provider if you have any questions relating to pregnancy and MS. He or she will help you make a decision based upon your specific condition and weigh the potential benefits and risks.
      Starting a Family With MS

      Focus on what matters most

      Having a family has always been a dream of mine. And for me, deciding to have Jacob was one of the best decisions that my husband and I ever made. I am thankful that we decided to have a baby regardless of my MS. Since having Jacob, my condition is not the only focus of my life. Being a mom with MS has motivated me to make the most of every moment spent with my family. Being a good mom was something that I aspired to be. Now I am one, and I just happen to have MS too.
      Article source: AboveMS

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