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  • Kris-MSConnection

    In an ongoing effort to learn more about who visits msconnection.org and why, we’d love to hear your answers to a few questions. Thanks in advance for any opinions you’re willing to share.

    Why do you visit MS-related online spaces like msconnection.org? What are you looking for and how do you know when you’ve found it? What is the most valuable part of the experience for you?

  • itsingodshands
    Apparently nobody wants to answer your question. I came on here last year hoping to talk to others who have been dealing with what’s happening to them. But i got no response no one seems to want to talk about it. 
    This time i came on to see if others have had the same physical experience as me with burning of the head and ear. We’ll see if anyone responds. 
    Ive heard many say that they don’t like to tell people they have MS, I say why not tell them ? 
    Its nothing to be ashamed of it’s not something you could help, it’s not your fault. I don’t look for pity when i tell people but it’s more of an explanation and besides in my life i’m In God’s hands what better place to be. 
    Sorry i just ranted on your post. I come on to try to relate and understand others and what they’re going through. 
  • Kris-MSConnection
    Thank you, itsingodshands. Hearing what brings you here and how you feel about it is exactly what we're interested in knowing.  :-)
  • bjbecker43
    I have no problem with online sites. I don't get out regularly and need to talk. I had a man ask me to connect with him today. I did so. I hope he doesn't turn out to be a scam.
  • boojangles
    Good morning inGodshands!

    I have not had any "burning" issues.  That sounds terrible!   My entire right side has been effected (drop foot "drop" hand) so I do occasionally get electrical zingers running down my entire right side (usually at night when I'm trying to sleep). I've also got an occasional numb feeling in my throat on the right side.    And, of course, the other "pains" associated with MS.

    I tell people I have MS.  Some just ask what it is, some want more details.  My favorite is the blank stare and change the subject.  Other than my physical issues, I don't think anybody would know something is wrong.  And, you can explain it but unless they have it they don't really get it.  Try as he might, even my husband doesn't get it.  I was shocked at how many people I actually knew that also have MS - and I would have never known had I not decided to be open with my diagnosis.  I would rather have people envy my positive attitude than pity me for having a disease.

    There is no better place to be than in the hands or arms of those you love and love you in return.   They uplift you, they guide you but they won't carry you the entire way...  

    With that said,  I hope you continue to find strength to deal with all the ups and downs of this crazy, unpredictable desease as well as a way to cool those hot spots!  



     
  • maria1
    Well Kris, There may be on line related spaces but they are not like msconnections.org. msconnections is not selling everything or anything, that is why I visit here. I have been to multiplesclerosisnewstoday.com and as soon as the page appears I get dizzy, there is so much going on I lose focus and feel disoriented AND I need to filter for myself the sales pitch from the reality. Here is an honest rapport about how people are feeling and what is going on with them, even though the discussions are sometimes quiet. And even with the silence there is the honesty about how people are trying to cope with all the surprises from ms. 

    I appreciate that no one is selling anything here and we can have a discourse about everything and anything though some of the anger gets filtered out. Even with the breaches in security it is a reasonably safe space. A clubhouse without walls.
  • Kris-MSConnection
    Thanks so much, Maria.  This is exactly the kind of insight we're looking for and things I hadn't thought of.  Thank you again for taking the time to respond.  :-)
  • golgotha
    First, my single biggest personal complaint about MSConnection.org: The site refuses to add formatting to my "My Story." :( Being the long-winded type, I took the trouble to use paragraphs and formatting, but the site insists on presenting people's My Stories as a wall of text. Considering the site uses a slick WYSIWYG editor, why not present people's My Stories as formatted? Those stories are great I think, but the wall-of-text angle discourages people from reading them.

    Aside from that pet peeve whine, the site is useful just to connect with other MSers. Since we can have a strong tendency to become housebound, depressed and/or isolated, developing connections with other MSers is critical and desperately needed.

    The site seems well-run and is heavily moderated, but some aspects are "clunky." For example, the "Connection" procedure seems a bit odd (but I'm not a Facebook user). The person-to-person private mail systems seems a bit odd (and underused?) too.

    And I still wonder about the wisdom of limiting reply threads to posts down to 2 levels. In some ways that's good to prevent people from going off on tangents and evolving sub-threads of different topics, but it also seems a bit limiting.

    One thing I'd encourage more of is to have MSConnection folks chime in with links to the main MS site. That main site has a wealth of info, but like any site with tons of info it's hard to find what you're looking for. The MSConnectioners whacking us with a clue-bat, so to speak, is a gentle reminder to us that there is a gold-mine of info on the main MS Society web site.
  • Kris-MSConnection
    Hi golgotha -- Thank you for the insights (I'm collecting them all) and the Friday laugh ("whacking us with a clue-bat"). Laughing any day is good but laughs seem to come quicker and are more enjoyable on Fridays. Thanks again and have a great weekend.  Kris
  • RQManchester
    When I was first diagnosed 16 years ago this august, I didn't know ANYTHING about MS.  I was very scared.  I went to a local support group in my town that ate at shoney's once a month, thinking that I would find commiserate spirits.  It was just basically a social club situation.  I wanted information on research and things I could do to help myself.  I really wanted knowledge.  And a woman came in with her parents, and she was in very bad shape.  She was in her 30's, and this group just had nothing to offer her.  I felt so very bad for her -- I will never forget her!  She was lonely.  This site is a support goup in its essence.  It gives me a chance to connect with others and to learn.  Thank you for this site.

    I do agree that I would like to read others' MS stories.
  • Kris-MSConnection
    RQManchester -- Thanks for the insights and you're welcome.  I glad the site helps you make those vital connections.
  • 90ragtop
    I'm a spouse caregiver.  I just joined today. 

    It is REALLY frustrating to be the spouse of an MS victim.  First, you are watching the most important person in your life suffer and struggle with this disease.  Second, we too just lost the life we had planned to live, and must now devote essentially our full time to caring for an invalid.  To have worked and saved and scrimped for a lifetime with the goal of traveling and participating in various activities when retirement age comes around, only to have the rug pulled from beneath you just as you enter the so- called "golden years," is cruel and devastating.

    The problem is compounded when your ill spouse refuses to admit to anyone that they have MS, and would be unhappy knowing that the caregiver spouse has emotional needs that they can't meet resulting from the burdens of caregiving and the unwelcome imposition of a sexless marriage.  Having an online resource like this gives us a place to vent and console one another without our spouses knowing that we belong to a support group.
  • maria1
    90ragtop, thank you for your honesty. We appreciate the truth, ms uncovers our nedd for honesty, and your words are true for both the older of us and the younger of us, and it, for sure, changes the way we look at life.
  • Kris-MSConnection
    90ragtop -- thank you for the candid insights. I'm glad to hear this site enables you to find support and a place to vent. 
  • golgotha
    Oh, since I found this thread again I'll drop in another whine about the site. :) Take it FWIW Kris:

    One annoyance of the site is that the WYSIWYG editor used here is nice, but it "breaks" the spell checker in my web browser (Firefox). I haven't bothered to check why that's happening, but on other sites that doesn't happen with their WYSIWYG editors.
     
  • Kris-MSConnection
    Thanks for letting me know, golgotha.  I will ask our devs about it.   
  • AKQ4840
    I have MS and I am also an advoate for those of us with this disease.  I came here (and on-line) to learn more about the community and see how people express themselves, see what people know, what I don't know, what's new in research, and for friendship.  Sometimes people need to just express frustration or ask a question.  MS is such a weird disease and no two people have the same exact symptoms!

    I have found my on-line experiences both good and bad.  The great is meeting people!  I am an outgoing person and I love to help.  The bad and ugly is just my perception.  I used to moderate an extremely large MS group on Facebook and I had to leave because it just became a festival of complaining and there was no positivity.  I think you have to be positive to deal with this disease.  

    I hope I have answered your question, feel free to follow up!
  • kristeninprogress
    I came here searching for answers from people that have been through the process of getting a diagnosis. I'm having a very difficult time going through this, and I think it'll help talking to others. šŸ™‚
  • GodGivesMePeace
    I just joined this group very recently. It is the first time I have been part of a support group like this. Most of my time is spent at home by myself, and I am looking to interact with people that have lives similar to mine, people who also have MS and really understand. Besides looking for support for myself, I am also hoping that I can be an encouragement to others who have MS. I know that it is a very difficult disease, and after living with it for 26 years, I recognize that my greatest needs are God and other people. By being part of this group, I hope that I can help to bring some sunshine into the llives of others, to help make their lives a little brighter. Together we are better.
  • capitolcarol
    Hi Kris,

    I joined because after reading all the material that I could about MS, I still had a lot of questions.  This site has people that will answer my questions and I also like that people have a different slant on different subjects.  I also like MS Connections because it provides companionship and a person can, when they are having a bad day, rant which will make me feel better afterwards.  And it is so nice that  there is always people around to chat which helps with the loneliness.