Newly Diagnosed with Multiple Sclerosis?

Posted on February 21, 2014 by MultipleSclerosis.net

People often experience the symptoms of multiple sclerosis long before they receive a formal diagnosis. Getting the diagnosis can result in a whole host of emotions, including confusion, stress, anger, or even relief. Knowing the cause of nagging symptoms can feel like a weight off your shoulders, but learning you have MS can also be a lot to digest.

We asked the MultipleSclerosis.Net community about the tips they would share with someone who has recently been diagnosed with MS. Nearly 300 people responded with some great suggestions. Here is a summary of the recommendations:

Do your research and advocate for yourself:

Stay open to ideas outside of mainstream information, but don’t believe everything you read online
Education is one of the most powerful tools you (and your caregivers) have
Find the right doctor and communicate openly – ask lots of questions and be completely honest (even with the most embarrassing symptoms). If you’re not comfortable, find a new doctor!
Make sure your doctor is knowledgeable in treating MS
Keep all your medical records

Take care of yourself*:

It’s important to manage your overall health – physically and mentally
Eat plenty of fruits and vegetables (avoid junk food)
Find ways to stay active. Even exercises that are not too strenuous will help you stay strong and limber
Give yourself time to get the rest you need
Don’t stop taking medications just because you start feeling better
Many people find that they are extra sensitive to extreme temperatures, particularly heat. Try to get out when the weather won’t be as bothersome and keep your body temperature as regular as possible

Make sure you have a strong support system:

Finding an MS buddy an be an enormous health
Work with associations and experts that can help you through the processes
Look to religion if it’s helpful for you
Keep a network of friends and family that can help you with even the simplest tasks when you need it
Keep your stress levels in check:
Try to keep stress levels as low as possible – stress can be your worst enemy with MS
For times when stress is unavoidable, develop ways to relieve/manage stress before it takes over and affects your health (yoga, meditation, friendship, etc.)

Keep a positive attitude, even when it’s not easy:

Know your limitations but find ways to continue enjoying life
Find something to be happy about every day
Remember that having MS is the “new normal” and be kind to yourself as you adjust
Take each day at a time
Go through all the necessary emotions – be mad, sad, angry…. then move on.

What advice would you share? Are there things you wish you knew at diagnosis?
*Please consult your doctor before making any changes to your diet or exercise regimen.

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.

MultipleSclerosis.net is Proud to Partner with MSAA

Posted on November 11, 2013 by MSAA

Recently, MSAA has partnered with MultipleSclerosis.net, and now we’d like to offer them a warm welcome. Since we first met the MultipleSclerosis.net staff, we have consistently been impressed with their willingness to share in our mission of improving lives today. Last week, we had the opportunity to detail our programs and services to their community. Today, we are pleased to introduce them as a regular contributor to our MS Conversations blog.

MultipleSclerosis.net is intended to provide thoroughly-reviewed and accurate information to people with MS and their caregivers, and we invite you to read more about it in today’s blog entry. We hope you’ll find their platform as empowering and educational as we did.

Launched in March of this year, the website MultipleSclerosis.net has rapidly grown to become one of the largest and fastest growing websites dedicated exclusively to Multiple Sclerosis patients and caregivers. We are happy to partner with MSAA to give a broader reach to the excellent work that MSAA does every day to improve the lives of people impacted by MS, and we look forward to being a regular contributor here.

Produced by Health Union, LLC, the company that also develops Migraine.com and RheumatoidArthritis.Net, MultipleSclerosis.net features hundreds of pages of fully-referenced original content on such topics as understanding the basics of MS, to more advanced topics like diagnosis, symptoms, treatment and an overview of MS Research. The site also features forums where users can discuss a wide range of topics specific to MS.

In addition to this in-depth content, MultipleSclerosis.net has assembled a diverse team of patient advocate bloggers; people with MS and/or caregivers of those with MS who write frequently on real-life topics related to their lives with MS. How it impacts them personally, how it impacts their relationships with others, and stories of their own personal trials and tribulations of a life with MS.

Lastly, MultipleSclerosis.net runs polls and surveys on the site. On survey, “MS in America” was an in-depth survey taken by over 3,000 MS patients. We asked participants of the MS in America study about their early experiences with MS symptoms and diagnosis. A majority of survey participants first experienced MS-related symptoms (including symptoms that were later identified as being related to MS) in their 20’s or 30’s. Still, most respondents were not diagnosed with MS until almost a decade later.

This is just the tip of the iceberg; further results of the MS in America study

are posted on MultipleSclerosis.net and we will continue to conduct large patient surveys to further enhance the understanding of the impact of MS on people’s lives.

So in the future, we will be bringing highlights from our polls, surveys, stories and blogs here to share, but first we wanted to introduce yourselves and welcome you to join the MultipleSclerosis.net community. We look forward to contributing here.

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