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    #61
    Originally posted by LollyLoo View Post
    Does ON last for days and weeks or can it be only several hours?
    ON is a name for a particular kind of optic nerve problem, and I don't think the name implies any particular longevity of sx.

    OTOH, by definition an MS exacerbation lasts more than 24 hrs. So for ON to be considered an MS symptom it would have to persist for more than 24 hrs...
    1st sx 11/26/09; Copaxone from 12/1/11 to 7/13/18
    NOT ALL SX ARE MS!

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      #62
      Well, I watched Jack on CNN last night.

      He seemed well informed and spoke well.
      Good job of making this more public, and Dr. Gupta gave a good explanation of the disease that people would understand.
      It was a good 30 minutes.

      Comment


        #63
        As long as people keep putting on the rose colored glasses when talking about the effects and life course of having MS, no one is going to pay much attention to the disease, lack of funding for research, or how little attention and devotion is given to other forms of MS besides RRMS!

        I hope that people who viewed the show will take a little bit of time and actually educate themselves on the lifelong battle of those of us with MS, not just the pretty forms, but all of it! The losses and sacrifices we have had to make because of MS , our family sacrifices, our financial turmoils, just everything that this ******* disease has robbed us of and WILL continue to take from us!
        and r
        I'm not going to apologize for my views, I don't consider them negatvie or pessimistic, but realistic.

        Thank you for that. That is part of what I have been typing and erasing for a while. While I am sincerely happy that Jack can have a "relapse" and then go back to his life, I also think this kind of publicity (which is the majority) does not speak for those of us who have become disabled. Either from having a progressive form to begin with, or just having MS for a while and collecting disability along the way.

        I am a very optimistic person and am doing well considering. And I know that people have to be given hope. But I also think that people need to get real about how devastating this disease is. We don't have a cure. There is no treatment at all for me and the treatments that are out there only claim to slow progression, and that hasn't even been proven beyond a shadow of a doubt. We can't even agree on what causes MS. So much more needs to be done and by people shouting that MS is "treatable" I think we are doing ourselves a disservice. MS is treatable - until it isn't. That's a fact.
        I don't fall, the floor attacks me. The corner of the bed is in on it too.

        Comment


          #64
          Okay, I've brought this subject up before and have been called "insensitive" because I mentioned it. But I read a few articles this morning about Jack Osborne, and several of the titles, and as with many of the posts say he has MS but it doesn't cause death.

          Yep, USUALLY, it's not a death sentence but there are deaths that occur from MS, not from complications of MS like aspiration pneumonia or sepsis from a UTI, but from a lesion in the medulla. I guess I'm more sensitive to this because I have a lesion in my medulla that affects my autonomic functions so that's why I have the info...not that any of us can do anything about sudden death from any reason..."to everything there is a season" is my thought on the subject, we don't control the time of our death or the mode of death. And I don't obsess about dying a sudden death because of that lesion. But to say MS does not cause death, is just not true.

          So nobody panics, it's very rare..but it does happen...by two modalities usually sudden cardiac arrest or sudden respiratory arrest. Interestingly they only find out the actual cause upon autopsy because they find an active lesion in the medulla.

          Of course the chances of it happening are less than the chances of dying from a gazillion other reasons like getting hit by a car, getting struck by lightening or dying from some other cause or more common disease like cancer, etc...but it is misinformation that is being dispersed when they say MS, in and of itself, never leads to death.

          We don't give a thought when getting into a car about dying in a car accident, and so we shoudn't give a thought about a sudden death from MS. It's just that I see false info put out there, and once again when MS comes to the forefront a cheery picture gets painted, and there's not a lot of cheeriness about people with severe disease. And in my opinion, as long as the "oh it's not so bad" position is pushed on the public, the less urgency there is to find a cure, or even a decent treatment.

          Just my 2 cents.

          Comment


            #65
            He Will do So Much Good by Fighting MS in the Public Eye

            In Engalnd we haven't seen anything on telly about it but it's been in the newspapers.
            Sharon really touched my heart with her somment about "Did I eat wrong during pregnancy?" I was DX in 1994 and my Mum blamed herself and it literally took tears for her to finally believe that it wasn't her fault. I'm not a big Twitter user but I felt compelled to tweet her telling her this and that it it NOT her fault.
            I also tweeted Jack telling him that he has 2 major factors inhis favour
            1. Young onset (I was 22) he's 26
            2. Presenting with ON - as did I

            I told him that i was 43 now and still working full time and still exercising between relapses.
            When I was DX, people were lovely with their sympathy, but i really wish that someone who had had it for 20 years and was still doing fairly well had told me this - so I told him.

            He will do well as he has a fighting spirit and prognostically, things look good for him.
            Ozzy said that he wished it was him and not Jack as people would just think - oh well, his past has caught up with him.
            It's so hard for PWMS's parents, but they have nothing to reproach themselves for.
            Sometimes Bad things happen to good people, they shouldn't, but they do and that's life.
            My best wishes and prayers are with them all
            xxx

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              #66
              Originally posted by MarkLavelle View Post
              ON is a name for a particular kind of optic nerve problem, and I don't think the name implies any particular longevity of sx.

              OTOH, by definition an MS exacerbation lasts more than 24 hrs. So for ON to be considered an MS symptom it would have to persist for more than 24 hrs...
              Thanks Mark!

              Comment


                #67
                I was on a plane returning from hot Texas (and humid, yuch!) when I found the article in People magazine on Jack and his MS diagnosis. Did I read right that he was looking into a hormone treatment?

                Anyone heard of a hormone treatment for MS? I don't remember hearing of one.

                I do know of a guy who went to South America for an experimental stem cell treatment, he said it didn't change his symptoms any.

                Comment


                  #68
                  Rag Magazine Headlines

                  Yesterday while in a check-out lane, I saw a magazine cover featuring a picture of Sharon Osbourne hugging her son with the headline, "I Will Not Let My Son Die." If she had any control over this article and the headlines, I don't think she has educated herself about MS. Too bad for her son.

                  Comment


                    #69
                    I agree I was angry when I saw this. I won't let my son die. Now I am trying to explain to my 11 year old who saw it in the grocery line why she would say that when I told him I will not die from my MS. Talk about sending the wrong message!

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                      #70
                      Originally posted by deescee View Post
                      Yesterday while in a check-out lane, I saw a magazine cover featuring a picture of Sharon Osbourne hugging her son with the headline, "I Will Not Let My Son Die." If she had any control over this article and the headlines, I don't think she has educated herself about MS. Too bad for her son.
                      What did the aliens say?

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                        #71
                        Big A--

                        I understand the Aliens were singing "Life is a cabaret, ole
                        pal" and were quoted as saying that Jack Looks So Good,
                        though!!

                        Comment


                          #72
                          Originally posted by MS TOO View Post
                          Anyone heard of a hormone treatment for MS? I don't remember hearing of one.
                          http://clinicaltrials.gov/ct2/show/NCT00451204

                          "A Combination Trial of Copaxone Plus Estriol in Relapsing Remitting Multiple Sclerosis (RRMS) (Estriol in MS)"

                          Comment


                            #73
                            I am not sure if this is the hormone treatment Jack was talking about, but I just got through with it and for me, was not a good experience. Still dealing with horrid side effects. go to msassociation.org/about_multiple_sclerosis/medications/types/acthar_gel.asp It may work well for others for personally, I will not take it again. I wish Jack and each of you all the best. MS tends to mess things up doesn't it? But we all just have to charge on!

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