Announcement

Collapse
No announcement yet.

MS Society-Org Lying to Us?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    Originally posted by kellygrn View Post
    Here is the site that you can order a card to carry with you alerting ER doc about the symptoms of AD. I have had only one episode & luckily had a nurse with me who knew what was happening.

    Here are the signs to look for. If it is not treated immediately, you die.

    The signs of AD include: * High blood pressure
    * Pounding headache, flushed face
    * Sweating above level of spinal injury
    * Nasal stuffiness, nausea
    * Slow pulse, lower than 60 beats per minute
    * Goose flesh below level of spinal injury






    http://www.christopherreeve.org/site...2IkL0LmP5IvIdF
    Thanks Kelly,

    I'm assuming your info was for me since I mentioned autonomic dysfunction. I don't have dysreflexia although they thought so at first because of the spikes, even when I'm sleeping. However, it's good for folks to know that autonomic dysreflexia can happen to an MS patient...I they used to believe it only happened to folks with SCI, but now have learned otherwise.

    I have clonidine on hand to bring down the bp when it spikes. But after suffering some bouts of SVT as well, the latest theory is it has something to do with a medulla lesion that somehow doesn't allow my bp or heart rate to be controlled normally, once they take off, there's no turn off signal from my brain..so I take meds (Clonidine and Atenolol) and wait for them to kick in....if they don't within a reasonable amount of time, I have to go to the ER, and they can use medication to snap me out of the svt or to bring down the bp. Something to do with baroreceptor failure (I think that's what it was named...a little foggy on the proper name right now).

    But to add to the subject, I'm the kind of person who wants to hear the worst that can happen, that makes it easier to process for me. And there are worse things than SUDMUS, just watching those videos of Annette Funicello made me aware of that.

    Also have known a couple of folks whose MS was totally debilitating, so I know how bad it can get.

    Comment


      #17
      Failure to understand.

      Then by your reasoning HIV/AIDS does not kill.
      They merely weaken the bodies immunity system and something like pneumonia or cancer then beats your own system and kills you. NOT HIV/AIDS.
      It's too bad that some people get all up on their perch when the have no clue what they are talking about.
      RRMS Re. Clinical RN, Cardiology/Psychiatry.
      Dave
      "Journeyman"

      All of life is a sequence events. Pick out one moment and your can track it in many directions. There are laws of how the "end cause" legally has to be placed. Organizations are not lying you just do not grasp the whole picture of health and legality.

      Comment


        #18
        I understand what is being said but in reality what difference does it make? We are all going to die eventually from something, does that mean everyone should walk around with a doom and gloom attitude as they know one day it will happen to them?

        I personally don't see it, am I happy about having MS? NO, would I like to be cured tomorrow? Sure. Will it do me any good to sit around and think about it 24/7? No and I don't, not from a lack of acceptance just that I know it will not help me in any way and actually can cause stress which is not helpful with MS either. I'm not one to sit and research MS all day I have a lot of better things to do and not enough time to do them as it is.

        I am not a newby to MS, I have had sx dating back to the mid 70's that were only just investigated and dx as MS 3 1/2 yrs ago. Maybe that's why I look at things differently, I have learned to live with the sx during all that time so other than the dx and meds life isn't much different. JulesA and I have discussed this a number of times in the past so I know they are rolling their eyes while reading this.

        In regards to more publicity about MS to the public we need to put the blame on the MS societies. I regularly see tv commercials for cancer society, have never seen one for MS society has anyone? As far as donations I get all kinds of requests for donations but not a single person w/o MS that I have asked has rcvd a similar request. just all my personal opinion.

        ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
        Plan for the future, but not too hard; it’s not your decision anyway

        Comment


          #19
          The fact that some people do die from MS means that this fact should be published. I don't want someone to lie to me and say it'll never get that bad. Nobody knows. I did find something on the internet that said people with MS tend to live around 10 years less than those with no health problems, but everything else said life expectancy is unchanged. Tell that to the people who got lesions in the wrong place.

          Originally posted by Scooter24 View Post

          In regards to more publicity about MS to the public we need to put the blame on the MS societies. I regularly see tv commercials for cancer society, have never seen one for MS society has anyone? As far as donations I get all kinds of requests for donations but not a single person w/o MS that I have asked has rcvd a similar request. just all my personal opinion.
          I think that's a very good point. My mom recently got a call from one of the MS organizations (can't remember who) asking for donations (that I'm pretty sure she only donated because of me), but aside from that, I've never even heard of it. The NMSS has no problem sending me emails all the time asking for donations (which is ironic because when I talked to them, it was about a job loss), but it seems like they don't do nearly enough to reach out to the general public. Maybe if more people did understand at least something about MS, they would be more inclined to donate so that we could work harder to find a cure.

          Going through nursing school, I don't even remember learning about MS, so if it was covered, it was only very briefly. I can definitely understand why nobody (except sufferers) knows anything about it. It's so frustrating though. I recently had to tell a family member (although I played dumb at first, as if nothing was wrong) because my grandma kept blabbing on about how I was sick (thanks, grandma, this is why I don't like telling certain people what's going on in my life). When I told her that my grandma must have been talking about my MS diagnosis, her response was about what you'd expect if someone just told you they caught a cold.

          Everyone knows if you have cancer, it's a huge deal. For a lot of people, MS can be just as bad. Why not let the world know what a terrible disease it really is? I do think a lot of funding needs to go toward research, but if these MS organizations would advertise, they'd probably get a much bigger response.
          Diagnosed 1/4/13
          Avonex 1/25/13-11/14, Gilenya 1/22/15

          Comment


            #20
            Interesting. I live in a town of 60,000 people and noticed an MS awareness ad on a billboard nearby. It was hard to understand what point the ad was making. It showed two people with a line connecting them. Part of the NMSS MS kills connections campaign, I think.

            Now that I'm thinking about it, it was about 1/4 mile from the state capital building. (I live in a very small state.) It's probably not a coincidence that our legislators are currently in session.

            Comment


              #21
              Originally posted by Mable View Post
              Interesting. I live in a town of 60,000 people and noticed an MS awareness ad on a billboard nearby. It was hard to understand what point the ad was making. It showed two people with a line connecting them. Part of the NMSS MS kills connections campaign, I think.

              Now that I'm thinking about it, it was about 1/4 mile from the state capital building. (I live in a very small state.) It's probably not a coincidence that our legislators are currently in session.
              On a local TV station here I have seen the MS kills connections commercial quite a few times. It didn't really explain anything for those who don't know but I was happy to see it mentioned anyway.
              He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
              Anonymous

              Comment


                #22
                I have seen those "MS Kills Connections" ads quite often recently, Wall Street Journal and I think USA Today also - full page ads at that. I don't understand them, so my thought was, if they are going to spend all that money on ads, why not make them easily understood?

                Comment


                  #23
                  Well said, Scooter. Finally someone with an outlook similar to mine. I get so tired of the doom and gloom of it all. I swear if I spend too much time on these message boards, I start to feel worse and symptomatic. I think this place gives off a lot of negative energy sometimes.

                  Everyone dies. From the minute we're born, we start dying. It's a fact. If MS doesn't kill you, something else will. That I know is the one certainty in this life.

                  My goal is to live the life to the fullest while I can. I realize I don't have as severe of MS as most of the people who spend time here, but I have it nonetheless. I try very hard to be positive and I have lost the anger and resentment. I only have so much energy in a day, I can't afford to spend it blaming MS Society and the like for shortcomings. All I can do is be my own advocate. Not only for MS, but for life because MS is just a portion of who I am.

                  Comment


                    #24
                    Originally posted by HETA78 View Post
                    Well said, Scooter. Finally someone with an outlook similar to mine. I get so tired of the doom and gloom of it all. I swear if I spend too much time on these message boards, I start to feel worse and symptomatic. I think this place gives off a lot of negative energy sometimes.

                    Everyone dies. From the minute we're born, we start dying. It's a fact. If MS doesn't kill you, something else will. That I know is the one certainty in this life.
                    .

                    It is so interesting to realize how different people read things differently.

                    You think it is doom/gloom and one of my biggest pet peeves is that the MS message boards are too fluffy and attempt to candy coat actual implications of having MS with the denial that our attitudes can affect our prognosis.

                    I totally agree our attitudes influence the way we handle what MS brings and I'm definitely going to keep fighting until I am no longer able however I have a healthy respect for what this miserable, progressive disease is capable. of and will likely do to me.

                    We've touched on this before, right Scooter?
                    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                    Anonymous

                    Comment


                      #25
                      Originally posted by Jules A View Post
                      ...
                      You think it is doom/gloom and one of my biggest pet peeves is that the MS message boards are too fluffy and attempt to candy coat actual implications of having MS with the denial that our attitudes can affect our prognosis.

                      I totally agree our attitudes influence the way we handle what MS brings and I'm definitely going to keep fighting until I am no longer able however I have a healthy respect for what this miserable, progressive disease is capable. of and will likely do to me...
                      I also get tired of the fluff and buff of MS. I don't want "doom and gloom" either, but am so sick of people not knowing about it, because no "MS Association" will educate what MS is, much less acknowledge it is, indeed, a "killer".
                      Live simply. Love generously. Care deeply. Speak kindly.

                      Comment


                        #26
                        Originally posted by HETA78 View Post
                        Well said, Scooter. Finally someone with an outlook similar to mine. I get so tired of the doom and gloom of it all. I swear if I spend too much time on these message boards, I start to feel worse and symptomatic. I think this place gives off a lot of negative energy sometimes.

                        Everyone dies. From the minute we're born, we start dying. It's a fact. If MS doesn't kill you, something else will. That I know is the one certainty in this life.

                        My goal is to live the life to the fullest while I can. I realize I don't have as severe of MS as most of the people who spend time here, but I have it nonetheless. I try very hard to be positive and I have lost the anger and resentment. I only have so much energy in a day, I can't afford to spend it blaming MS Society and the like for shortcomings. All I can do is be my own advocate. Not only for MS, but for life because MS is just a portion of who I am.
                        I agree completely with all of this, but understand that those who are experiencing a lot of pain and suffering do not. I just wish there was some place to go for MS support that was not so negative.

                        Comment


                          #27
                          Originally posted by HETA78 View Post
                          Well said, Scooter. Finally someone with an outlook similar to mine. I get so tired of the doom and gloom of it all. I swear if I spend too much time on these message boards, I start to feel worse and symptomatic. I think this place gives off a lot of negative energy sometimes.

                          Everyone dies. From the minute we're born, we start dying. It's a fact. If MS doesn't kill you, something else will. That I know is the one certainty in this life.

                          My goal is to live the life to the fullest while I can. I realize I don't have as severe of MS as most of the people who spend time here, but I have it nonetheless. I try very hard to be positive and I have lost the anger and resentment. I only have so much energy in a day, I can't afford to spend it blaming MS Society and the like for shortcomings. All I can do is be my own advocate. Not only for MS, but for life because MS is just a portion of who I am.
                          I don't feel like what was said on the thread is doom and gloom. It's just talking about what some people do experience.

                          The whole point of the thread, as I saw it, was if the public in general realized how impacted some MSers are, that might encourage more reasearch and in turn maybe they'd find a cause, or even a cure. As it stands now, after years of research...we're nowhere when it comes to cause or even if we all suffer from the same disease ( or if each subset is a different disease.)

                          As far as this board giving off "negative energy"...I've said it before, but I'll say it again. There's a lot of brave souls on this board who face life everyday, battle the disease, win some battles, lose others, but at the end of the day, they go to bed, and get up in the morning, with the courage to start another day and live the life they've been given. To talk about their lives and experiences isn't "negative energy" it's just being realistic.

                          And people do need to express themselves without any guilt that they're bringing "negative energy" to the board. Those inner thoughts need to be voiced, if not here, then where? So my suggestion has always been, if you see a thread headed in a direction that will affect you negatively...quit reading that thread.

                          Comment


                            #28
                            Originally posted by rdmc View Post
                            I don't feel like what was said on the thread is doom and gloom. It's just talking about what some people do experience.

                            The whole point of the thread, as I saw it, was if the public in general realized how impacted some MSers are, that might encourage more reasearch and in turn maybe they'd find a cause, or even a cure. As it stands now, after years of research...we're nowhere when it comes to cause or even if we all suffer from the same disease ( or if each subset is a different disease.)

                            As far as this board giving off "negative energy"...I've said it before, but I'll say it again. There's a lot of brave souls on this board who face life everyday, battle the disease, win some battles, lose others, but at the end of the day, they go to bed, and get up in the morning, with the courage to start another day and live the life they've been given. To talk about their lives and experiences isn't "negative energy" it's just being realistic.

                            And people do need to express themselves without any guilt that they're bringing "negative energy" to the board. Those inner thoughts need to be voiced, if not here, then where? So my suggestion has always been, if you see a thread headed in a direction that will affect you negatively...quit reading that thread.
                            You have eloquently summarized my feelings exactly. Thank you.
                            He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                            Anonymous

                            Comment


                              #29
                              rdmc, I've use the expression MS Warrior in a couple of my posts, but you've expressed my sentiments much better:

                              There's a lot of brave souls on this board who face life everyday, battle the disease, win some battles, lose others, but at the end of the day, they go to bed, and get up in the morning, with the courage to start another day and live the life they've been given. To talk about their lives and experiences isn't "negative energy" it's just being realistic.

                              Just want to say thank you for that.

                              Comment


                                #30
                                Originally posted by rdmc View Post

                                As far as this board giving off "negative energy"...I've said it before, but I'll say it again. There's a lot of brave souls on this board who face life everyday, battle the disease, win some battles, lose others, but at the end of the day, they go to bed, and get up in the morning, with the courage to start another day and live the life they've been given. To talk about their lives and experiences isn't "negative energy" it's just being realistic.
                                So true! And I want to add that these brave soulscome here not only for themselves but to help others. They offer support, help people understand, share knowledge, comfort others, and go above and beyond to give caring, concern and hope.

                                I chose to see beauty in this... not doom and gloom.
                                When I can laugh at my experiences, I own them and they don't own me!

                                Comment

                                Working...
                                X