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Upset about SPMS

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    Upset about SPMS

    It’s been years since I’ve posted here because luckily I was very stable. A year ago I was talking to my MS specialist and he said he’s pretty confident that due to my history and mild level of illness after over 25 years, he thought I would stay the same. Last year was rough on me medically with non-MS issues. At the end of August my legs turned into noodles/jello (which is common and temporary). I also had severe fatigue and slept all the time for a month and a half. My medical issues have been resolved but my normal legs have yet to return. I had my annual doc appt and he ran 8 different blood tests to rule out muscular problems. All are negative. I am now SPMS, my doc even said ‘I was hoping that you weren’t going to progress’.

    I have been waiting for them to improve and regain some energy but I realize that it isn’t going to happen. This is now my new normal. I am pissed because I have a lot to do, we are selling our house and buying a smaller one. That’s so much work! I’m upset that I am not up to the task and will now have to ask for help, which I am not used to doing. I don’t allow myself to have pity parties so I’m not whining, I am just ticked off that I’m getting worse after doing all the right things to avoid progression.
    Possible MS 1993, RRMS, Dx 2007, SPMS 2013. Avonex - Oct '07 - Jul '12, Gilenya - Sept '12 to May '13, Tecfidera - June '13 to present. You see things as they are and you ask why..I dream of things that never were and I ask 'Why Not?!'

    #2
    Hello Curious1

    Thank you for posting, and for sharing your current situation with us.

    I'm sorry to learn that your MS has transitioned from stable to progressive. That is a tough pill to swallow, especially after doing the right things in the hopes of avoiding it.

    This is a good place to let go of some of your 'ticked-off-ed-ness'.

    Most of us really do understand.

    Asking for help wasn't one of my strong points either, but asking for, and receiving help has actually made my life less stressful and a little easier to deal with.

    Good luck with your house selling and buying - hope it works out well for you.

    Stop by and post when you can, and let us know how you are doing. We'll be here.





    PPMS for 23 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Welcome back Curious1.

      Sorry to hear you have progressed. Moves can be stressful alone, doubled when we are not able to do all that we want to. Understandable why you are angry about it - it is part of adjusting to this disease. Any time we lose a little independence, it takes time to grieve the changes.

      Asking for help can be difficult, but as KoKo said, it can relieve some stress. For me, I try to think of it as extra time with someone I care about if it is family or friends helping out. The hardest for me is when my husband has to do added tasks because I can't. I am sometimes angry about it, sometimes upset. But the funny thing is he never looks at it that he is doing extra - I just need to adjust my expectations. And it helps to ask myself if the roles reversed, what would I do and feel? Most of us would gladly help someone else out. It is hard to go from providing help to receiving help and a constant battle with my self.

      This is always a safe place to let our frustrations with MS out. Sometimes, we just need to know someone else gets it. Please keep posting!
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Hi Curious1.

        I am really very sorry. Doing everything right and still end up with a change to SPMS would be like a "gut punch." I did a fair amount of moves though the years with this disease and although difficult and tiring I did okay. At this point in my life if we decided to move I would have someone come in pack, move it, unpack and setup.

        I really don't think I can do a move again with just my husband and myself. I simply don't have the stamina or endurance. Some of this is due to the amount of years with a disease that sucks, some has to do with another health issue and most of all lets not forget age

        I very much believe in working with a Physical Therapist(PT) as well as exercise for keeping my legs (mobility) going for as long as I possibly can.

        Have you tried working with a PT? Do you do exercise to improve core strength? I am SP and I am living proof improvements can be made and/or sustained (for some). Pease don't let the change from RR to SP stop you from believing it might be possible to get your legs working better.

        I wish you all the best in moving (such a difficult undertaking for you at this time
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

        Comment


          #5
          Sorry to hear of your progression.

          I have also progressed to SPMS. For a number of years, I was noticeably declining at a quicker rate than before, even though I was not having MS flares.

          Switching to a GF, DF diet and making additional lifestyle changes has kept me relatively stable since making those changes. Some people report reversal of some symptoms with those changes.
          ~ 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.

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