Community Report: The composition and experience of the Multiple Sclerosis community

Six months after its public launch, the MS PatientsLikeMe community includes over 1 in 200 MS patients in the U.S. and the rate of growth continues to escalate.

To mark the occasion and experiment with new community tools, we put together the first PatientsLikeMe community report. In this report, we begin to paint a portrait of the MS community, who is in it, and how the community compares with previous research on MS. This post features portions of the report.

In the descriptive section we discuss characteristics of the user base such as what types of MS users have. As you can see in the figure below, all types of MS are represented with 61% of users report having relapsing and remitting MS.

Distribution of MS types on PatientsLikeMe

The report also explores research questions that the size of our community now allows us to address. For example, we look at the many ways MS first manifests itself – the variety of initial symptoms. In the figure below, we chart how two different types of MS (relapsing-remitting and secondary progressive) first appeared. The most common first symptoms for both types were “sensory changes” and “optic neuritis.” But “Difficulties walking” was a more common first symptom for relapsing-remitting MS than for secondary progressive MS.

First symptom by MS type

If you have MS or are a caregiver to someone with MS, take a look at the report posted on PatientsLikeMe. Note: requires registration on the site.

Based on feedback, we will be integrating some of the elements into an new upcoming area on PatientsLikeMe. Stay tuned!

PatientsLikeMe member jfrost

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5 thoughts on “Community Report: The composition and experience of the Multiple Sclerosis community”

  1. Hi,
    I recently joined but can not keep up with getting back on due to high stress and now in bed. SPMS w/ full spectrum of symptoms…now nausea from sensory over stim. and irritable bowel and spastic colon tearing me apart. wish to say thanks, and will try to print out to read.

    when I am at my worse, I can not communicate…when I am at my best I am trying to be part of the person I was, and motivate and advocate for and with other people not as fortunate to be as pigheaded and stubborn as me! my mind is scattered from frontal love plaque, as well as every other part of my system being haywired. i know there are others like me but never got to read up or correspond with you.

    my dream and my goal is to become as stable as possible in all areas of the life that got literally ripped apart when I crashed and dr’s were worried about law suits so didn’t treat. spent most of 6-8 months desperately seeking treatment and then have tried to do self rehab since.

    animal therapy is good. horse therapy is a dream. whendx of SPMS rescued and rehabed 2, now struggle with burden of holding on to them and creating a network to share their awesome healing with others and to return part time to the consultant and training and advocacy for individuals who can not.

    just went through a big battle to get fatherinlaw into accute rehab after fx hip and surgery. was literally snowballed and railroaded by every aspect of the healthcare system! WON! PCP literally assaulted me and and yelled at my fatherinlaw and husband 20 minutes before transfer to facility of our choice near us, and well know to me thru the system. rest of family now making ugly statement and accusations about us, but we got what was best for hi,….at 93 he lived on his own, drove , fished, played golf, went to NC to other sons for 3 mos each year and is in good health and mind as sharp as a tack! system was railroading into NH due to age!! would have won. hope I “bounce back soon…please pray, he will be coming home with us for continued rehab before deciding where to live the next 10-20 years! kathy the dreamer

  2. Stephen Schwenker

    I know what you are experiencing all too well (except for the father-in-law). Hang in there Kathy, all we have to do is look around us and see that there are those whom are much worse off than we are albeit doesn’t feel like it some times.

    One of the techniques I use is to make fun of my current circumstance, i.e., I constantly am dropping things, can;t type 80 words a minutes…now I peck like a chicken, the cramping and burning are without a doubt the toughest to “shake” off. I also have bladder and bowel problems and they are horrible, demeaning etc. Unfortunately we are most ofter left to our own devises which ain’t much! Have you tied meditation? Are you familiar with the concept of a “self fulfilling prophecy”? Let me know if you have an interest, it does help.

    My user name in the community is “schwenks”, so feel free to check out my profile, or feel free to email me.

    Hang in there Kathy,

  3. Hi Kathy

    My motto has always been ‘Never say Never’, I can see you think in a similar fashion. Show a red rag to a bull and we’ll be there fighting against injustice and stupidity often to our own detriment as the MonSter wrecks its revenge..

    Your battle to save your father-in-law is testimonial to our (I have fought similar battles against unfair, stupid conditions) refusal to lie down and accept the apathetic status quo. We are known in the social comentary literature as ‘culture breakers’ those who rail against the prevailing norms when they are wrong and unfair. Martin Luther and Charles Darwin were other examples, famous beyond their lifetime.

    I don’t know whether either of us will go down in the history books to quite the same degree but I’d like to think it was possible. The idea of being an anonymous cog in the wheel, brick in the wall, horrifies me beyond belief.

    Keep up the good fight you are not alone. I wonder whether thats why M.S. chose us, it has been the only thing my grim determination has been temporarily slowed by. How about you.

    Cheers Cathy Manners (Melbourne Vic Australia)

  4. Wow! Finally I can hear from ppl like me who feel totally robbed of life,dignity and so forth. I thought I was being weak and pitiful. I wrote a poem describing exactly how I feel a couple yrs. ago. Check it out and see if U all can relate. God b w/U all!
    😉 Josie66

  5. Has anyone had a problem like unto mine: (I truly hope not) My husband is a great provider and a great father to our two daughters, but he has changed his attitued toward me totally, I feel like an anchor that has dragged him down and continues to rob him of the life he wants. He will not talk to me about any of my feelings, emotional or physical, or my fears. In fact, he really doesn’t much talk to me at all. Probably the most hurtful thing I can think of right now is, we have been married almost 22 years, I have been diagnosed for 14 of those years and I have never seen him pick up article, brochure, magazine or a medical report pertaining to Multiple Sclerosis. He will not attend the information seminars that are often offered by the pharmacy companies, even though he knows I cannot drive at night, because he said he doesn’t like to see how handicapped alot of the people are.,…..Does he think I do? Does he think it does not break my heart for them and scare me beyond measure? I don’t know what he thinks or if he cares, his actions scream no to me. I so want to be wrong, I love him and I have given my life to being his wife and the mother of his children. Is there something I’m not seeing or that I’m doing wrong?

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