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    #31
    TaoWarrior - thanks for sharing. I am so happy to hear you are doing well. I love when I see people who have had success on DMTs and are able to go ahead living a pretty normal life. While a cure and a preventative vaccine would be the ideal, until then, I am glad to celebrate stability and normalcy.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #32
      TaoWarrior -
      Support can happen in many ways. Some of us have been through more years and more challenging symptoms than others. Perhaps we can offer wisdom.

      You can offer friendship and encouragement. We're all in different places with our MS. We still all have something to offer.
      ~ Faith
      MSWorld Volunteer -- Moderator since JUN2012
      (now a Mimibug)

      Symptoms began in JAN02
      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
      .

      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

      Comment


        #33
        TaoWarrior, so glad you are doing well.

        Mamabug, I love what you said.
        God Bless Us All

        Comment


          #34
          MSworld is competing with other forums that allow instant posting and peer to peer messaging. I think this difference is a huge factor in the dwindling participation. The moderation strikes out any chance of having the feel of a conversation.

          Perhaps you all would consider piloting those options without committing to them. Just to see what happens as newbies arrive and oldtimers realize the options exist.

          Comment


            #35
            Originally posted by Temagami View Post
            MSworld is competing with other forums that allow instant posting and peer to peer messaging. I think this difference is a huge factor in the dwindling participation. The moderation strikes out any chance of having the feel of a conversation.

            Perhaps you all would consider piloting those options without committing to them. Just to see what happens as newbies arrive and oldtimers realize the options exist.


            My responses require contemplation... even the decision to post at all (Can I add to this in a positive way? Am I qualified to respond at all?). I believe this is true for others.

            The thread poster deserves a responders time to digest the question.

            I do not object to any "instant posting and peer to peer messaging" being introduced, but the very possible sacrifice to a post which required honest, thoughtful contemplation.

            This is "like button" thinking, more "sound bite," less discourse... quick, quick, quicker! Once made available and at some point, it will be, then "look how quick & witty I am" replaces mindful rhetoric.

            Just my humble opinion.

            Comment


              #36
              As a moderator, I believe that we (as moderators) likely should talk about the suggestions. Those options were both removed prior to my time as moderator; I'm not aware what the reasons were.

              As a member, I don't recall that waiting for moderation bothered me, personally, in the past. In the present, I'm now able to post instantly, so waiting doesn't apply to me anymore.

              For those who prefer more instant conversations, chat is an option instead of message boards. Some members use both. That would allow for thoughtful contemplation on the message boards, as well as back and forth conversation in the chat room.

              But I did like the private messaging feature. Sometimes, private messaging is a good way to connect regularly when we find someone with whom we have lots in common. I have a friend from California, a former MSWorld poster. We got together once a year for quite a few years because her parents lived near to me.

              We know each others' spouses and parents.
              We continue to be good Facebook friends.

              She no longer has reason to visit Kansas because her parents don't live here anymore. But our friendship would not have blossomed without private messaging.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #37
                Good points Jerry.

                I think faster posting leads to the faster transfer of information which is great if you're a newly dx'ed person looking for answers. That's how I found this place, looking for info.
                The future depends on what you do today.- Gandhi

                Comment


                  #38
                  Originally posted by TaoWarrior View Post
                  For sure that is a factor in my case. I started Gilenya during trials and have been on it ever since. I was DX 3 years after first symptoms and started G 2 years after that. So I guess that makes it almost 10 years on G with something like only 2 relapses in that time.

                  Let me tell you I am super apreciative of those who came before me and suffered so much and built a network of support, and research that has allowed me to have so much success. Sadly the flip side of that is being mostly normal means I'm not on here as much to pass on that support.

                  So thank you to all the "early adopters" who's stuggles have lead to my success.
                  How refreshing! I am curious if you grapple with fatigue? I could work with a ton of other crummy MS quirks but my fatigue is totally what did me in.
                  Tawanda
                  ___________________________________________
                  Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                  Comment


                    #39
                    Originally posted by 502E79 View Post
                    My responses require contemplation... even the decision to post at all (Can I add to this in a positive way? Am I qualified to respond at all?). I believe this is true for others.

                    The thread poster deserves a responders time to digest the question.

                    I do not object to any "instant posting and peer to peer messaging" being introduced, but the very possible sacrifice to a post which required honest, thoughtful contemplation.

                    Just my humble opinion.
                    I haven't replied to this thread yet, but I agree on this train of thought.

                    I understand that Facebook has many participants who wish to go this route and that is wonderful! We are here on the message boards for who wish to be here, even though we have slower responses, or to be here just to read others stories and comments.

                    I really like to think that quality over quantity (of participation and number of posts) goes a long way, thanks to all you wonderful people

                    And btw, PMing has not been a feature for a very long time, nor planned for in the future based on safety and security purposes. So too, the "instant posting" for the same reasons.
                    1st sx '89 Dx '99 w/RRMS - SP since 2010
                    Administrator Message Boards/Moderator

                    Comment


                      #40
                      Originally posted by Seasha View Post
                      I really like to think that quality over quantity (of participation and number of posts) goes a long way, thanks to all you wonderful people
                      Absolutely, Seasha!

                      So many of the posts here have several paragraphs with valuable info, or personal experiences.

                      Contemplation - I like that word!

                      Take Care
                      PPMS for 26 years (dx 1998)
                      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                      Comment


                        #41
                        I've been around for many years. These days I don't comment much, mostly read, and if I have an especially pertinent take on the issue, I will post. But in many threads, what I would have said has already been said by someone else, and that's okay, I see no reason to reiterate.

                        Back in the day the threads would be off the front page in a matter of hours, and we'd have to bump them up just to keep something on the front page.

                        I agree that people expect everything quickly these days. Merchants can get something to you the same day you buy online, who could have imagined. Order your groceries and they're at your house and on your counter in less than 2 hours (btw, this has to be the best favor for an MSer...usually my husband is great, he gets everything we need without even writing him a list, but sometimes, especially if you want some specific things, it's just there, voila!) I found I was withdrawing from speed and constant social media, so I quit going to FB, twitter, but I do keep Instagram so I can see all the cute photos and videos of the grandkids)

                        So that being said, forum "attendance" dropped off when mods got fewer and slower at posting replies, but that's sort of a chicken or the egg remark because it might seem they were slower at posting replies, or maybe there were fewer replies so there was less to post.)

                        Also we went to a time when there seemed to be "medical experts"...they weren't labelling themselves that way, but they made replies about medical issues, and sounded authoritative on subjects of health you'd assume they were better with a medical answer. Some posters would even title their thread with the title including a "username" asking the so-called "medical person" to look at their thread. That went on with several subsequent posters, when one would fade away, another would appear...I don't see that anymore, so I don't think that's happening anymore. But it seemed to take some "steam" out of the reason to post since they really only want to hear so and so's response.

                        Well that's my 2 cents...I'll try to comment more, because I'm guilty of browsing and not commenting.

                        Comment


                          #42
                          Seasha, quality over quantity makes a lot of sense.
                          God Bless Us All

                          Comment


                            #43
                            Originally posted by Tawanda View Post
                            How refreshing! I am curious if you grapple with fatigue? I could work with a ton of other crummy MS quirks but my fatigue is totally what did me in.
                            Lord yes it's my most persistent symptom.

                            I take B12 1000mg 1-2 times a day, take 150MG armodafinil (nuvigil) once a day and drink a sinful amount of caffeine. Most days that is enough, some days not so much. Since I am on the road all day I can frequently find time to take a catnap on those days and that gets me until I get home and can just lay on the couch until it is late enough for bed time.

                            On Sundays I only drink caffeine and less than every other day to let my body recuperate, as a result I'm barely coherent most Sundays and I never accomplish what I hope to. I've thought about adding Sundays back in to the whole stimulant regime but one of the big lessons I've learned from you guys here is to listen to your body. Since 6 days a week I tell my body to shut up I figure the 7th I should at least try. Besides even God needed one day off a week.
                            Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou

                            Comment


                              #44
                              I haven't been around for some time. Unfortunately have had more setbacks with my MS. Just a few challenges this past year include infections, high fevers (not good when you are heat intolerant), and a broken hip from when I fell off my shower chair. I hope to be back more often.

                              Originally posted by pennstater
                              They were also intimidated by reading more progressive stories on any site, as it represents their fears
                              I had a MS nurse who once told me she discouraged patients from visiting MS forums for this reason. She also mentioned that information provided on these sites wasn't always accurate.

                              All things considered, I've found MSWorld empowering. I feel better knowing others "get it" and have been able to become a better advocate for myself from the knowledge shared on this site. This site is also recommended by the NMSS, which is how I found about it. So that's also something that I feel good about.

                              Originally posted by 502E79 View Post
                              My responses require contemplation... even the decision to post at all
                              So do mine plus I'm not quick to get my words into writing anymore. Finding the right words can be a struggle and takes me forever to type.

                              I don't visit the chatroom anymore, but found it helpful when I wanted to connect with a 'live' person. It was usually the busiest in the evenings.

                              Originally posted by Mamabug View Post
                              But meeting MSWorld friends in person is incredible !
                              Yes, it is!

                              I've had the opportunity to meet two people from the chatroom. Came close (literally within a mile) to meeting someone else from a different state from the message boards. Unfortunately timing didn't work out as we needed to get to another destination.

                              Originally posted by Mamabug View Post
                              One was Alan Mandel, our CEO. He invited me to attend a patient advocate seminar with him in Kansas City about three years ago.
                              So sad to learn he is no longer with us. He will most definitely be missed. https://www.msworld.org/forum/showth...del-has-passed

                              Originally posted by rdmc View Post
                              maybe there were fewer replies so there was less to post
                              I found that to be the case when I was a moderator.

                              Originally posted by Myoak View Post
                              I believe more people read than post but you are right, usage is down from where it was. It's difficult to know why exactly but people have many more options these days, it seems.
                              Agree.

                              Originally posted by Myoak View Post
                              When I win the lottery, I'd love to arrange travel and a banquet for everyone using this site so we could meet one another. Now that would be fun!
                              Sounds great! Hope you hit it big soon.
                              Kimba

                              “When you change the way you look at things, the things you look at change.” ― Max Planck

                              Comment


                                #45
                                Originally posted by Kimba22 View Post
                                I haven't been around for some time. Unfortunately have had more setbacks with my MS. Just a few challenges this past year include infections, high fevers (not good when you are heat intolerant), and a broken hip from when I fell off my shower chair. I hope to be back more often.
                                Hello Kim

                                It is so great to hear from you!

                                I often wonder how you have been doing, and miss seeing your thoughtful input on the message boards. Miss you as moderator and active member!

                                Sorry to learn about the setbacks and recent challenges that you have been dealing with. Hopefully you get a reprieve, and have better days.

                                Looking forward to having you around here more often!

                                Take Care
                                PPMS for 26 years (dx 1998)
                                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                                Comment

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