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MS In America: What’s That?

MS In America: What’s That?

An MS diagnosis is a shock, but what can make it more difficult is the lack of information available for patients and their loved ones. Many people quickly jump online to research the ins and outs of MS but have trouble finding helpful information that can tell them what to expect. Even more difficult can be finding someone who actually lives with MS to connect with and share experiences.

How can a survey help?

The MS In America survey is an annual survey on MultipleSclerosis.net that seeks to close some of these gaps. The survey covers “basics” like diagnosis and treatment experiences, but also dives into the nitty-gritty, like the emotional impact and the seemingly ‘small’ day-to-day challenges.

Each person that takes the survey contributes to a better understanding of MS and can help others who are going through it feel less alone. Sharing experiences in the survey can reveal how similar each person’s journey with MS can be, as well as the differences that make each journey unique.

What happens after I take the survey?

After the survey closes each year, the Editorial Team at MultipleSclerosis.net takes your responses and creates an infographic filled with information about life with MS. But that’s not all – over the year, we publish articles based on learnings from the survey, like these. Each article published using responses from the survey contributes to the information available to those affected by MS and helps them connect with those who have walked the same path.

The 2019 survey

The MS In America 2019 survey is now closed! Thank you so much to everyone who participated! One voice may seem like it won’t make a difference, but each voice can change how others perceive life with MS and bring comfort to someone coping with his or her diagnosis.

Stay tuned for upcoming articles and infographics from this year’s survey results!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Contalita
    2 months ago

    Hello, To everyone that read my texts. posted13 hours ago, I’m sorry for some of the mistakes and that text… Ex. I am a hypochondriac, should have simply been read I’m not a… sometimes I’m having a bad hands day, & will speak text instead of typing, thanks to technology☺.

  • Shelby Comito moderator
    2 months ago

    Hi @contalita, no need to apologize AT ALL! This is a safe space and I know that many here can also relate to having bad hands days. Thanks so much for taking the time to comment. We’re here for you and grateful to have your voice in the community. – Shelby, MultipleSclerosis.net Team Member

  • Contalita
    2 months ago

    THANK YOU! I found it’s pretty interesting, that there’s very little information about MS, because even my medical insurance had very little information but put send out pamphlets about diabetes high blood pressure ect. I know that in the pastMS considered a rare disease, but now it seems to be out in the open due to celebrities like Montel Williams Salma Hayek and many others, however it is still very hard to find updated information about Multiple Sclerosis. I I think that the more information needs to be available concerning Multiple Sclerosis, now that many people are now affected by it, other than the MS Walk (that was held in my city just a few weeks ago) to help people know that you’re a hypochondriac, and that your multitude of symptoms are real.

  • Alina Ahsan moderator author
    2 months ago

    @contalita I couldn’t agree with you more. We hope that sharing results from surveys like this will help others better understand MS and its impact. Thank you for taking part!!!
    -Alina, MultipleSclerosis.net Team Member

  • flora68
    2 months ago

    My problem with the survey is that it’s narrowly designed for people who had NO significant physical problems until they got MS; no pain, no difficulty walking, nothing like that. So ANY difficulty walking, for example, is presumed to be FROM MS, and in my case, and I’m sure in the cases of some others, that’s simply not the case. I suffered a serious spinal injury and had to start using a walker and sometimes a wheelchair years BEFORE I had ANY symptoms of MS. So doing a disability assessment would not really assess how MS is affecting me. And I also have Ménière’s Disease, which affects my hearing and balance, among other things, so assessing the quality of my hearing is no reflection of my MS because that’s not the cause of it. I know this will be a shock to whoever designed this survey, but having a major pre-existing injury, deformity or illness does NOT make one immune from developing MS, as unfair as that may seem. So please keep that fact in mind before you crank out another waste of time survey, OK? Not everything that happens to a person with MS is necessarily FROM the MS.

  • Alina Ahsan moderator author
    2 months ago

    @flora68 Thank you for sharing this feedback! You made some really important points that I will be sharing with the survey team. So many in our community live with multiple health conditions or injuries, and we want to make sure we represent everyone in our survey! I appreciate you taking the time to comment
    -Alina, MultipleSclerosis.net Team Member

  • Contalita
    2 months ago

    Thank You, I also had pre-existing conditions and have been on social security for 10 years prior to the diagnosis of MS 2/5/10.

  • mwrightorlando
    2 months ago

    Hello Alina,

    Tried to email you, however, it would not accept to send. Guess that makes sense as your day is busy enough as team member.

    Just wanted to thank you for accepting the friend request. Your articles are very well written, informative and helpful.

    Was wondering how long ago you got involved with MultipleSclerosis.net as a team member, as well as asking if you have MS,

    Thank you for being such a great team member, putting out such great content, as well as the time you commit to MS.

    All the best to you…

    Namaste’
    Mike

  • Alina Ahsan moderator author
    2 months ago

    Hi Mike,

    Thanks so much for the kind words! I love being part of the MultipleSclerosis.net team and learning from the community. I’m sorry the email didn’t work – you can always contact me by emailing contact@multiplesclerosis.net! You can also learn about others on the Team (including me!) here: https://multiplesclerosis.net/community/editorial-team/ Thanks so much for taking the time to comment 🙂

  • mwrightorlando
    2 months ago

    Any way to lend asistance in helpimg others to have more education, guidance, and clearer definitions of what MS is – I’m in. Thank you for the post and survey… All the best to you and your family!

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