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Do You Know What is Worse Than Having MS?

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    #1

    Do You Know What is Worse Than Having MS?

    Getting Sucker Punched by MS!

    Having MS, getting so sick you go from an EDSS of 1 to 2.5 and huge jump to 6.0/6.5. You go downhill faster than a pair of breeding rabbits, going into cyclical flares that causes a serious MS Complication. I have been told that one needs to breath oxygen to keep the brain functioning and heart pumping. That goes on for six-months and then this well known MS doc stabilizes you and puts you on Tysabri. Yea! Now that's what I am talking about.

    And you get so much better over the next few months that you are singing church hymns in the shower. Your EDSS improves by 3 points. Then you go in for your first MRI since you started Tysabri thinking that this is going to be the best MRI ever only to find out your cervical cord lesion is lit up and that you should be in a flare...but you don't have any symptoms. WTF????

    So now the big mystery...what comes first? Is it the Contrast Enhanced Lesion or the Flare? That is the question...and I am certain I will find out that answer.

    I turned 51 last week. That is old to many, still young to a few. But I have been told, due to the nature of my MS...I most likely will not see my 65th birthday. And I have come to peace with that. We all have crosses to bear.

    But is it too much to ask for just one year of no worries or medical issues. I mean seriously, I just renewed my Passport so I could go on a final trip to Europe. Hmmm.

    I feel like I have a ticking time bomb in me right now. And if I do go into a full fledged flare...IT...WILL...BE...MY...LAST...

    MS does define me, it does not make me stronger, it absolutely has me and it is in charge, and this Southern Baptist Gal finds absolutely no comfort in God, because God has done squat...he has not knocked on my front door...not once. If suffering gets you a one way ticket to Heaven, then I would rather go to Hell with a lot of my other friends and play poker and drink beer. Blasphemy you say? I don't give two flying figs.

    It's 9 O'Clock in the morning, and I could sure suck down some alcohol right now. Not suppose to drink...think I am going to change that stupid rule!
    Katie
    "Yep, I have MS, and it does have Me!"
    "My MS is a Journey for One."
    Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri
    Tags: None
    #2
    Katie, so sorry to hear.

    Comment

      #3
      I hate this stinking thief of a disease. I used to think that getting diagnosed with ALS or Huntingtons would be the worst thing in the world but they at least have an end point, MS just seems to go on and on and on and on.
      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

        #4
        Katie, I know you are having a difficult time - - and that's an understatement. I've seen your previous post about the flare despite being on Tysabri - and despite the benefits your were seeing being on the drug.

        I'm so sorry you are going through this. I've been there...I am there. I know and feel your pain.

        I often say that I need a few days to "stomp and cuss" when I have yet another blow. I usually try to limit myself to 3 days, otherwise, I worry I might do it for the rest of my life.

        God's always there, even though it seems like there are dark, dark times when there's no evidence he's listening, no evidence he's there. Now, a Southern Baptist gal knows this deep down inside...don't give up the faith.

        I'm sorry you are going through this, Katie.

        Sending positive energy your way.

        Debbie

        Comment

          #5
          Katie,
          Hang on to the good portions. Keep singing those songs. I'm glad you've been "feeling" better now the MRIs just need to catch up to your improvements.

          I wish you well ...

          Comment

            #6
            I'll have a drink with you, Katie, since no one should drink alone. (Of course the times are all way out, so trying to have a drink together could rapidly lead to serious intoxication.) Anyway, I'll have beer tonight, I think. Cheers. And Happy Birthday.

            Comment

              #7
              Katie, I'm so sorry. I was hoping Tysabri was your miracle drug, it was sounding so positive when you started it. Don't you wish you didn't have that MRI, I was recently blind-sided by one so I know how crap it feels.

              Are you going to continue with Ty, or try one of the new orals? I know your faith is shaken, can't blame you! It's ok to be angry with God, He can take it!

              I read on this Board (quite a while ago) that the lesions cause the flare, I thought it was the opposite. I really hope that lit-up lesion quiets down and gives you a break. You're so upbeat and seem so genuinely nice, a caring person despite your many challenges. Breaks my heart.

              Hang in there girl!

              Jen
              RRMS 2005, Copaxone since 2007
              "I hope to be the person my dog thinks I am."

              Comment

                #8
                Thank you all for the kind words. Very much appreciated.

                I am going to remain on TY as long as my MS specialist let's me. I personally think he will keep me on TY and if that does not work...I'm am unfortunately most likely headed down the Chemo Path. I hope Marco is right and my MRIs need to catch up with the way I am feeling. That's really the only thought that is keeping me going right now. TY has to be doing something or I would think that I would at least be wall surfing. Cervical Lesion Flares are nasty.

                Jules...I agree with you about endpoints. It takes a serious emotional toll. Some of us have to keep going through the grief cycle over and over. During my diagnosis I was very aware of the different Demylinating Diseases and the one disease that I hoped it wasn't was MS. I am always for quality not quantity...but my thinking is different than many.

                Think-Thanks for having a beer with me last night! You are a good buddy my Aussie Friend.

                Well...it is Sunny and Warm outside and I think some fun in the sun needs to be added to my agenda...just in case I start having symptoms of that flare that I am suppose to be in.

                Thank you all again for letting me vent.
                Katie
                "Yep, I have MS, and it does have Me!"
                "My MS is a Journey for One."
                Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                Comment

                  #9
                  Originally posted by Marco View Post
                  Katie,
                  Hang on to the good portions. Keep singing those songs. I'm glad you've been "feeling" better now the MRIs just need to catch up to your improvements.

                  I wish you well ...
                  I agree about the MRIs, after the first one that diagnoses you, how helpful are they really?! You are case and point for why I don't get them anymore. I feel like the doctors are basically trying to read tea leaves when reading subsequent MRIs. You are your own best health advocate...the doctors are just doing their best to assist you (I know I would not want their job!).

                  Hang in there, Katie. I think many of us have these same frustrations here but we just aren't as good as you and Jules A. at articulating them. You are doing us a service!
                  Tawanda
                  ___________________________________________
                  Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                  Comment

                    #10
                    Hi Katie,

                    Maybe this will encourage you, maybe it will discourage you...I guess it depends on how you view this info and I hope it's not a discouragement.

                    Years ago, the neuro who diagnosed me didn't even believe in regular MRIs...her philosophy was, we treat the symptoms, not the MRIs. She retired and neuros since want regular MRIs taken, as do most neuros. But after seeing the link below, I can understand what she meant.

                    I've posted this link quite a few times, but it shows how lesions come and go, sometimes never causing symptoms.

                    This guy had 24 MRIs in a year (ugh) and they time lapsed his MRIs together. The entire year, as far as he was concerned, his symptoms were stable and he did not flare, but from the MRIs you'll see that his lesion activity had a life of it's own, obviously apart from his symptoms.

                    http://www.msdiscovery.org/news/news...more-meets-eye

                    Comment

                      #11
                      Hi, I am going to be 61 this year but someone told me I would probably not see 60 (drum roll here) some years back, I all of sudden went from having just your nasty MonSter to having a huge lesion(Balococentric M.S) and a lot of new lesions that they called I think it was schilders M.S.
                      Who ever told you this,((I turned 51 last week. That is old to many, still young to a few. But I have been told, due to the nature of my MS...I most likely will not see my 65th birthday. And I have come to peace with that. We all have crosses to bear.))
                      Did whoever told you this spell their name GOD? You could rebound right back or not but nobody knows a friggin thing when it comes to the MonSter. I am not trying to foster false hope but gee I am not supposed to be here right now .
                      Good Luck We All Need It. Fight on
                      PEACE

                      Tortis

                      Comment

                        #12
                        Hi Katie,

                        I am so sorry you had a bad mri report. I hope you will be able to stay on TY since you sx's have gotten better.
                        God Bless Us All

                        Comment

                          #13
                          Katie, so sorry for your MRI results. But as Marco and others have said, you have seen such improvements with TY, it may just be a matter of time for the MRI results to catch up.

                          Good thoughts going your way

                          Bree

                          Comment

                            #14
                            [QUOTE=Tawanda;1448534
                            Hang in there, Katie. I think many of us have these same frustrations here but we just aren't as good as you and Jules A. at articulating them. You are doing us a service![/QUOTE]

                            Your quite welcome. I try to just express what I am feeling...something that MSWorld allows me to do.
                            Katie
                            "Yep, I have MS, and it does have Me!"
                            "My MS is a Journey for One."
                            Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                            Comment

                              #15
                              Originally posted by rdmc View Post

                              http://www.msdiscovery.org/news/news...more-meets-eye
                              WOW! This is great rdmc! It is encouraging. Thank-you for sharing that with me.
                              Katie
                              "Yep, I have MS, and it does have Me!"
                              "My MS is a Journey for One."
                              Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                              Comment

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