Read All About It: MSAA’s Newest Publications

Posted on June 4, 2018 by MSAA

Recently, the Multiple Sclerosis Association of America proudly published two new publications: the Winter/Spring 2018 Edition of The Motivator, and the 2018 MS Research Update.

This newest edition of The Motivator features the cover story, “Finding Direction When Newly Diagnosed,” which covers a range of topics including MS basics, treatment options, employment issues, government programs, and more.

The 2018 MS Research Update provides a comprehensive overview of study results on many of the approved and experimental disease-modifying therapies for MS, as well as highlights on new directions in MS research.

Read excerpts from these two publications here:

Continue reading →

About MS – Newest MSAA Publication

Posted on March 5, 2018 by MSAA

MSAA is pleased to announce its latest booklet, About MS. In this second edition, MSAA provides a comprehensive introduction to the development and treatment of MS, along with a great deal of useful information that touches on many aspects of the disease.

The second edition of About MS includes:

An overview of the history, development, types, and potential causes of MS
Information on who gets MS, how MS is diagnosed, and how disease activity is evaluated
Descriptions for treatments for both relapses and long-term disease activity
And more!

Read an excerpt from About MS here:

Initially, most people with MS experience symptom flare-ups, which are also known as relapses, exacerbations, or attacks. When someone experiences a relapse, he or she may be having new symptoms or an increase in existing symptoms. These usually persist for a short period of time (from a few days to a few months) and afterward may remain symptom-free for periods of months or years. This type of MS is referred to as relapsing-remitting MS (RRMS). Approximately 80 to 85 percent of people with MS are initially diagnosed with this form of the disease.

Over time, RRMS may advance to secondary-progressive MS (SPMS). This form of MS does not have the dramatic variations in symptoms that RRMS does, but rather has a slow, steady progression – with or without relapses. If relapses do occur, they usually do not fully remit. Without treatment, approximately half of individuals with RRMS convert to SPMS within 10 years. However, with the introduction of long-term disease-modifying therapies (DMTs), fewer individuals advance to this latter form of the disease.

Individuals who are not initially diagnosed with RRMS may be experiencing a more steady progression of the disease from the onset. Approximately 10 percent of the MS population is diagnosed with primary-progressive MS (PPMS), where individuals experience a steady worsening of symptoms from the start, and do not have periodic relapses and remissions.

Continue reading this booklet at mymsaa.org/publications/about-ms/ to learn more about multiple sclerosis history, diagnosis, treatments, and resources.

Things To Consider When Searching for the Right MS Treatment

Posted on June 20, 2016 by MSAA

There are many important factors to consider when having conversations with your doctor about your treatment options. The treatment decision for each person is unique and must be addressed individually between you and your healthcare team. Additionally, it’s important to recognize the need to prioritize your issues, questions, and concerns in order to maximize the time with your healthcare team. With so much information to remember, organize, and prioritize, MSAA recognized the need to help frame these important discussions. By doing so, MSAA is able to support patients and their physicians in their S.E.A.R.C.H.™ for the most appropriate therapy for each individual.

Designed as a memory aid, the S.E.A.R.C.H. acronym represents the key areas that should be considered when “searching” for the most appropriate MS treatment. Each letter represents an important topic that must be considered by patients, physicians, and other healthcare and social service professionals. S.E.A.R.C.H. stands for:

MSAA has produced a variety of informational tools to help people maximize their success with S.E.A.R.C.H.™. Current S.E.A.R.C.H.™ tools available for download include:

The S.E.A.R.C.H. program overview booklet, “How to S.E.A.R.C.H. for the Right MS Therapy for You!”
An informative webinar and accompanying PowerPoint presentation
The S.E.A.R.C.H. Patient Workbook – A convenient way to collect, organize, and store information as you “search” for the most effective treatment to meet your needs. The Workbook also features an office visit questionnaire to help prioritize questions and maximize your time with the doctor.
A comprehensive chart of all 14 disease-modifying therapies for MS currently approved by the FDA, and more!

For more information about the S.E.A.R.C.H. program and to receive any of these resource items, please visit the S.E.A.R.C.H. for Treatment Options page on our website.

Hard Family Conversations and MS

Posted on February 11, 2015 by MSAA

By: Matt Cavallo

During my initial hospital stay and subsequent diagnosis of MS, one of the biggest challenges that I faced was talking to my family. We had a history of multiple sclerosis in my family. My dad’s sister, Loretta, was diagnosed with MS in the 70’s and she passed away in 1981 due to complications of the disease. During that time, there was little in the way of treatment available to help her. Not only that, but the disease progressed very quickly. She passed when I was only four, but I still can remember her. She was in a wheelchair and she couldn’t talk, she could only mumble and moan.

While I was laying in my hospital bed contemplating my diagnosis, I was thinking that I shared the same fate as my Aunt Loretta. The whispers around my bed from my family members supported my fears. As a result of these fears, the conversations changed. Family members started treating me differently. They were walking on eggshells around me, careful not to divulge any of their true fears of my future. Even with treatment, as my functionality returned, everyone held their breath for MS to strike again.

Six months later I had another drastic exacerbation. Then, twelve months after that another one. It seemed like I was following Aunt Loretta down a perilous track. And my family treated me that way. It was to the point where I didn’t want to have conversations with them because I wanted them to remember the person I was and not the person I had become with MS.

However, there were a couple of things I had going for me that my aunt didn’t have. One was timing. In 2005 there was a lot more knowledge about the disease and many more treatment options available than when she had it in the 70s. The second thing was history. I knew my Aunt Loretta’s story and I didn’t want mine to end the same way. Family members told me that she didn’t like the advice she received from a doctor, so she never went back to that doctor. I used that information to motivate myself to learn as much as I could no matter if the news was good or bad, scary or hopeful. I just wanted to get the most objective, up-to-date information available to fight. Lastly, I had hope. In the seventies there was little known about the disease. Today, there is research and scientific breakthroughs, social support networks, and hope.

If I could go back in time with all I know today about living with multiple sclerosis, the fear and egg-shell conversations with my family would be dramatically different. I would use the resources around me, like My MS Journey, to educate myself and ease my family’s fears instead of staying silent.

Today my family conversations are no longer about the horrors of MS. My family and I now talk about my future and my kids and all of the awesome stuff that normal people talk to their family about. Today we are a normal family and I just happen to carry the torch of multiple sclerosis. I have had it for approaching ten years now and I am still working, playing, being a dad and living the life I always wanted to live. That makes me proud to talk about my MS journey and how I have lived a great life despite my diagnosis.

Resource:
https://mymsaa.org/journey/

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

MS in America – The Use of Oral Therapies for the Treatment of MS

Posted on October 24, 2014 by MultipleSclerosis.net

In our September article we shared some of the key findings from The MS in America Study (MSIA), highlighting some of the ways that multiple sclerosis (MS) impacts the everyday lives of those with this condition. In addition to collecting information about the impact of MS, we also asked people with MS to tell us about their treatment, including what they’ve tried, if they were satisfied, and what they are currently taking for their MS. Because oral therapies are relatively new to the treatment armamentarium, we decided to take a closer look at the use of oral therapies for MS in our community.

As one would expect, infusions, interferons, and other injectables are still used by a majority of MS patients. However, results from MSIA, which was completed by more than 5,000 eligible respondents, demonstrated that oral medications for MS are used by nearly one third of patients who have relapsing-remitting MS (RRMS), and more than 50% of people using injectables are considering switching to an oral medication!

We asked all survey participants how long they have been on their current therapy, and as one would expect, those who were taking oral medication for RRMS reported being on that treatment for a shorter period of time than those who were on other treatments (like injectables or infusion).

Interestingly, the vast majority (80%) of people who had ever taken an oral therapy for MS reported that they were still taking an oral MS treatment.

We also asked participants several questions about switching therapies. Most of those who reported switching from injectables noted that they did so due to needle fatigue and/or issues of tolerability. Other reasons included seeking better efficacy, convenience, safety, and cost, among others.

Many MSIA participants who had not recently taken an MS treatment reported that they had started anew with an oral medication due to a variety of reasons, including dislike of needles, and disease progression, among others.

Finally, of the MSIA respondents who were still taking injectables to treat their RRMS, nearly half (48%) said they have considered switching to an oral therapy. While much remains unknown about the long-term use of oral therapies for MS, it is clear that oral medications for MS play a critical role in how this condition is treated. For more results from the MSIA special report on oral treatments for MS, click here.

Planning for a Doctor’s Visit When You Have MS

Posted on October 8, 2014 by Samantha Schech

Being prepared and asking questions may assist in the overall care you receive at your doctor’s appointment. Taking control of your medical care by finding your voice and advocating for your health will help you to feel more involved in your health care decisions.

Well before your appointment, get in the practice of writing down questions you wish to address with your doctor. A journal or binder can be used to keep track of these appointments. Sometimes it is helpful to have one binder for all medical professionals so that you can review notes from all appointments. Dividers or clips can help organize one doctor or specialist from the next. If questions come up for your primary care while you are visiting with the neurologist, you can add them to the section for the primary care.

Before the appointment, prioritize the questions that are more important at that time. Often appointment time is limited, so by prioritizing the questions, you will assure that what is most important to you at that time is what gets addressed.

It can be a challenge to manage the patient-doctor relationship, especially if your doctor is not used to you asking questions. You certainly do not want to come across as aggressive by demanding the doctor answer questions. Before the appointment, make the doctor aware that you would like to discuss some concerns. By being upfront with the doctor, he or she can make sure there is enough time. Some doctors may prefer to follow-up and discuss questions through a phone call or e-mail.

Asking questions is important but so is making sure you hear and understand the answers you get. Taking notes during an appointment can help to clarify things after you have left the office. Having a care partner or family member at the appointment may also help in remembering some of the details of what you heard. If writing is a challenge, perhaps try using a voice recorder (with the doctor’s permission) to help re-play what was said during the appointment.

If you are having trouble understanding or are confused, ask your doctor to explain again. Ending your appointments with a summary can help to ensure that the doctor hears that you have understood the directions or information provided to you.

If there is something you are not sure about, ask for more information. Many doctors’ offices provide brochures, or educational materials that can describe a treatment or symptom. If the office does not provide these things, ask where you may find them. Perhaps you can reach out to one of the MS organizations to learn more about a particular treatment or symptom, or ask for information to be mailed to you.

By taking a more active role in your health care planning and decisions, you may feel more positive about the control you have over the disease.

How do you plan for your trip to the doctor or specialist?

Doing What Makes YOU Feel Good When You Have MS

Posted on May 14, 2014 by Samantha Schech

Multiple sclerosis in itself is a complicated and often unpredictable disease. We here at MSAA hear on a daily basis about some of the trials and tribulations that our clients with MS face. One of the most valuable lessons that I have learned in trying to understand the whirlwind of information provided about MS is to find something that is meaningful to you and to your unique situation. With all of the information available, finding something that will make YOU feel good is a priority.

Through social media, websites, and support groups, information is provided about a number of hints, tips, or things that one person may have done to alleviate their symptom, which is wonderful, but unfortunately may not work for everyone. Not every individual with MS will experience the same symptoms and even for those who may, those symptoms may appear incredibly differently.

The point behind the story and the reason for the title is that everyone has their own needs, and each person understands and knows their body better than anyone else. These experiences and feelings are unique to you and should be treated independently to others’ beliefs and thoughts. Focusing and developing ways that make YOU feel good may help to improve your overall day to day.

Explore yourself; perhaps through journaling you can identify some needs that could be met in order to make you feel good. Guided meditation is another way to explore your inner thoughts and feelings. Sitting in a quiet space with yourself and learning about your body and the way that it feels at any point throughout the day can help to center you and focus on what your body needs.

What can you do for yourself today that will make YOU feel good?

Latest Issue of The Motivator Now Available for the MS Community

Posted on April 22, 2014 by MSAA

The Motivator is MSAA’s award-winning magazine provided to the MS community and to our generous supporters. Distributed twice per year, this publication addresses the physical, emotional, and social issues that arise with MS, and provides information and support to many individuals affected by this disorder.

We’re pleased to announce that the Winter/Spring 2014 issue of The Motivator is now available to read!

Cover Story:
The Emotional and Psychological Symptoms of MS
… The symptoms of depression, anxiety, and pseudobulbar affect (PBA) are described, along with effective treatment strategies. Important information is also given on how these symptoms affect roles and relationships, sexual function, and self-image.
Read the full story

Feature Story:
…Competitive “biosimilar” drugs may soon be considered for approval. Read about how these “highly similar” drugs may affect procedure, treatment, and cost.
Read the full story

Program Notes:
…Details on MSAA’s new Swim for MS online Aquatic Center are highlighted. This national program initiative supports the awareness, understanding, and availability of swimming and aquatic exercise as a positive wellness opportunity for the MS community.
Read the full story

Read the latest issue of The Motivator

Comprehensive MS Research Update Now Available from MSAA

Posted on February 19, 2014 by MSAA

The 2014 edition of MSAA’s MS Research Update is a comprehensive overview of the latest research findings on the FDA-approved disease-modifying therapies, as well as many e,perimental treatments. This update features ground-breaking studies not only with medications, but also in areas such as stem-cell research, therapies for myelin repair and protection, biomarkers, genetic studies, and more.

In addition to the e,citing research aimed at relapsing forms of MS, a number of studies are also looking into the treatment of progressive forms of MS. To assist individuals interested in learning more, studies involving progressive MS have been highlighted.

Read MSAA’s latest MS Research Update here.

How do you treat your MS?

Posted on January 24, 2014 by MultipleSclerosis.net

Multiple sclerosis symptoms can vary greatly between different individuals, as can the progression of the disease. Therefore it’s no surprise that treatment strategies also vary from person to person. Since there is no known cure or “easy fix” for MS, the primary goal of treatment is to manage the disease while maintaining quality of life. There are currently a number of treatment strategies to help alter the disease course, manage symptoms, manage relapses, and support your overall physical and mental health.

In the MS in America study, 95.5% of respondents indicated that they had tried prescription medications while 85.3% were currently using prescription treatments. Although prescription and over-the-counter medications were the most frequently used treatments, a variety of Complementary and Alternative therapies were also utilized.

Nearly 80% of survey participants had tried Vitamin D and 62% tried exercise. Almost half of respondents tried changes in diet to help manage their MS and just over 10% of survey participants indicated that they were currently using rehabilitation therapies including physical therapy, occupational therapy, speech/swallowing therapy, cognitive rehabilitation, and vocational therapy.

Of these respondents, 57% were satisfied with their current treatment plan and 12.8% were dissatisfied with their current regimen (30% were neutral; n=2,854).

What treatment and management strategies have you tried for your MS? What’s worked and what hasn’t?

The MS in America Study was conducted over the Internet from November 2012 until January 2013. The primary goal of the study was to establish an understanding of the current state and trends of patients affected by multiple sclerosis. The survey included over 100 questions on a broad range of topics. A total of 3,437 people started the survey while 2,562 people completed the survey resulting in a high completion rate of 74.5%. To qualify for the survey, participants had to be MS patients over 18 years old and a US resident or US citizen living abroad.

The study was solely developed and funded by Health Union, LLC which does not manufacture, sell nor market any product to diagnose, prevent or treat MS or any other disease.

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